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Following suggestions from visitors to the website, this page has been set up to allow me to give details of items about M.E. and related issues, as well as other subjects, that will hopefully be of interest to those who visit the site. Do let me know what you think!


November 2017

Will The UK Establishment Finally Stop Denying The Reality Of ME?


http://www.huffingtonpost.co.uk/dr-simon-duffy/uk-establishment-me_b_18375968.html

By Dr Simon Duffy, Director of the Centre for Welfare Reform

Jennifer Brea's powerful film Unrest exposes the reality of Myalgic Encephalopathy or ME. This condition leaves people utterly exhausted, or as Brea puts it, like a broken battery, unable to charge beyond 10%.

ME is poorly understood and receives minimal research. Brea was repeatedly misdiagnosed and, on one occasion, even told that it was all in the mind - the result of some long-forgotten trauma.

Eventually Brea discovered that there was not only a name for her condition but that there are millions of other people suffering with ME. With the correct diagnosis she has managed to reduce the impact of ME on her life, but she also came to understand how this real disease creates double-barrelled suffering: first, it devastates your life by robbing you of energy; second, the failure of society to respect the reality of your illness makes you invisible and defenceless.

So, why has ME been so badly misunderstood?

Dr Charles Shepherd explains that in the UK two psychiatrists played a particularly damaging role, by treating an outbreak of ME (within a hospital) in 1955 as an example of hysteria. This dangerous desire to solve a problem by evading the problem, has been made all the easier by the emergence of something called the biopsychosocial (BPS) model: this is an all encompassing framework for rethinking illness - making it part biological, part mental, part social. This may seem reasonable, but it easily becomes a way of blaming the victim and claiming it's all in the mind.

The PACE Scandal also demonstrates the powerful forces at work. PACE was a research programme to test two 'therapies' for people with ME - Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). Although these therapies did not prove effective, researchers amended the rules of the evaluation so that people who had got worse were counted as having benefited from these therapies.

Outside the UK the PACE research has been severely criticised; but the Countess of Mar believes that the UK media has been frightened into silence by the Science Media Centre whose board members include Sir Simon Wessely, one of the psychiatrists connected to the PACE scandal. Even more disturbing is that Mrs May has now asked Wessely to lead an Independent Review of the Mental Health Act 1983 - a decision heavily criticised by independent advocates.

The UK Government also seems to have a stake in maintaining the belief that ME is all in the mind. Mo Stewart, in her book Cash Not Care, has shown how the US Insurance Company Unum has promoted the BPS model within the DWP, encouraging the UK Government to reduce disability benefits in order to grow the market for their own disability insurance products. Lord Freud cited the PACE research as important evidence to justify the use of BPS in their welfare 'reforms' and medical diagnoses have now been replaced with dubious catch-all assessments of 'readiness for work' or 'level of help.' The film I, Daniel Blake accurately captures many of the horrors of these mindless and inhuman processes.

Fortunately, in the USA, researchers are now taking ME seriously, and making important progress. CBT and GET are no longer recommended as helpful therapies and instead there is increasing recognition that excessive exercise can be extremely dangerous. The level of research is still inadequate, but no one doubts the reality of the illness and important and revealing tests have been developed.

Brea's film, which is winning awards and being widely seen, may help undermine the resistance of the UK establishment, but there is still a long way to go. Even if there are research breakthroughs people will still be living with the disabling consequences of ME. It is for this reason that the Centre for Welfare Reform is supporting the Chronic Illness Inclusion Project. Our aim is to help the community of people suffering from chronic illnesses (including, but going beyond, ME) to find their own voice, to build alliances with other disabled people and to ensure that they are no longer invisible before the eyes of the powerful.
 



November 2017

ME sufferers being shamefully let down by professionals


http://www.morningstaronline.co.uk/a-bd8f-ME-sufferers-being-shamefully-let-down-by-professionals#.WfQxjGiPLIU

LINDA BURNIP and DENISE McKENNA from Disabled People Against Cuts spotlight how people with ME are having their health and welfare harmed by poor research and misuse of statistics

LAST week, over 65 deaf and disabled people’s organisations, campaigns and mental health professionals wrote to the Prime Minister asking her to urgently rethink her decision to appoint Professor Sir Simon Wessely to lead the much-anticipated independent review of the Mental Health Act as announced in her speech at the Conservative Party conference on October 4.

Wessely’s body of work on myalgic encephalomyelitis (also known as chronic fatigue syndrome), and his conduct in relation to people with ME, make him resoundingly unfit to lead an inquiry into the Mental Health Act.

ME is a poorly understood illness, believed by most researchers in the field to have a physical cause. But the “psychiatrisation” of ME through a cognitive-behavioural approach to the illness led by Wessely since the late 1980s has resulted in treatment (particularly graded exercise therapy, or GET) which can be harmful and even coerced, in the stigmatisation of patients and let to the frequent denial of their entitlement to social security and support.

Wessely has consistently promoted the unsubstantiated suggestion that ME is caused or maintained by patients’ false illness beliefs and abnormal behaviour.

As a result, the integrity of patients’ experience of this devastating illness been destroyed as their testimony is deemed unreliable.

This form of “epistemic injustice” (according to medical ethics scholars Blease et al) has seen people with ME derided within the medical profession and wider society for misperceiving, exaggerating, even creating their own illness.

Wessely’s approach to ME involves treatment with GET, aimed at reversing the physical consequences of what he sees as their dysfunctional behaviour.

Nearly 50 per cent of people with ME surveyed reported that treatment with GET made their condition worse.

Yet Wessely and his colleagues are silent on the subject or dismiss patient experience as unreliable evidence or poor treatment compliance.

As a result, thousands of people with ME have received NHS treatment informed by his model that has further damaged their health.

Wessely continues to defend the notorious Pace trial, a study into CBT and GET treatment for ME/CFS part-funded by the Department for Work and Pensions and widely condemned by academics for misuse of statistical methods in order to produce positive-looking results.

Wessely’s involvement in media discussions about ME has further suppressed patients’ voices. Following the publication of results from the Pace trial, Wessely and his colleagues responded to concerns about their work by taking part in media campaign which promoted prejudice and led to those patients who had identified serious methodological and statistical problems being dismissed as irrational extremists motivated by anti-psychiatry.

The Science Media Centre, for which Wessely is a trustee, has played a key role in promoting misleading information about the Pace trial, and smearing critics.

During the 1990s Wessely advised the DWP (then DSS) that classifying ME as a neurological illness, as the World Health Organisation does, would perpetuate patients’ false beliefs, prolong their illness and result in a deluge of disability claims.

The influence of Wessely and his colleagues on DWP training manuals on CFS/ME has undoubtedly resulted in a disability assessment system biased against people with ME and caused them great additional difficulty in accessing support with the extra costs of their disability.

The work of Jonathan Rutherford reveals how Wessely was among a group of medical and insurance industry professionals whose work on “malingering and illness deception” influenced the DWP’s understanding of ill-health and disability.

Wessely and his colleagues shaped the ideology underpinning the disastrous work capability assessment (WCA) known as the “biopsychosocial model.” According to Professor Tom Shakespeare and colleagues who have exposed the poor science underpinning the biopsychosocial model, this approach to disability effectively blames disabled people seeking social security support for their own misfortune.

The WCA has had a devastating impact on the lives of disabled people as part of a package of welfare reforms leading, in the words of the UN disability committee, to “human catastrophe.”

All of these activities amount to an abuse of power by Wessely against people with ME. His thoughts and actions have led to stigma, iatrogenesis and a denial of their rights to support, all of which have compounded the burden of this illness immeasurably.
 



October 2017

UK ME/CFS Biobank team receives largest ever grant to continue biomedical research project


http://www.meassociation.org.uk/2017/10/uk-mecfs-biobank-team-receives-largest-ever-grant-to-continue-biomedical-research-project-30-september-2017/

Breaking News! UK ME/CFS Biobank team receives largest ever grant to continue biomedical research project

By Russell Fleming, Content Manager, ME Association.

ME Association trustees and staff were over the moon when we heard that the CureME team at the London School of Hygiene and Tropical Medicine had received a new grant of $2.1 million from the National Institutes of Health (NIH) in America.

The funding represents the biggest ever single investment in biomedical research to happen in the UK and it will enable a current project, that is searching for disease biomarkers, to be extended for another 4 years – until 2021.

The project is a longitudinal study that is measuring changes in the immune system and genetic profile of individuals in a disease whose symptoms are known to fluctuate over time. The initial £1 million project, which began in 2013, was over 3 years and had also been made possible by funding from NIH.

Dr Luis Nacul, who leads the CureME team, is also responsible for overseeing the UK ME/CFS Biobank, which has been built and maintained by charity support and the funding from America.

The new grant will enable the Biobank to increase in size as even more blood samples and clinical data will be collected from people with ME/CFS, multiple sclerosis, and healthy controls, and then made available to research applicants.

“The new grant from the NIH (US) will enable, for the first time, comprehensive prospective assessments of cases of ME/CFS at regular intervals.

“This greatly enhances the chances of a breakthrough in the understanding of the pathophysiology of this complex disease and the identification of much-needed biomarkers for the diagnosis of different sub-groups of patients.

“We very much look forward to continuing our partnership with the patient community, which has been key to the success of our research so far.”

Dr Luis Nacul, Principle Investigator, CureME team, LSHTM.

The Biobank is the only resource in the world able to include samples from those most severely affected – the house- or bed-bound – and is the premier resource outside the United States for the study of the disease. All participants are examined by a clinician and must conform to the Biobank’s rigorous protocols.

The ME Association has been a long-time supporter of the Biobank and provides funding to support its development. This longitudinal project, that in total will amount to some £2.56 million, represents one of the most exciting opportunities to learn more about this devastating disease.

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association, and Chair of the UK ME/CFS Biobank Steering Group, commented:

“This is a significant and vital sum of money that will help scientists unravel the mysteries of this devastating illness.

“The irony is that the funding comes once again from America.

“What this seems to suggest is that the USA is far more serious about finding the underlying causes of M.E., while the UK seems most willing to invest in inappropriate studies using cognitive behavioural therapy and graded exercise.

“The fact that the NIH has decided to provide another major grant is an important endorsement of the ME/CFS Biobank, and we would like to congratulate all the staff who have been involved in setting up and developing what has become a vital new part of biomedical research infrastructure here in the UK.

“We hope that other research groups will also now start to make use of this unique resource to achieve desperately-needed breakthroughs into the cause and treatment of ME/CFS.

Dr Charles Shepherd, Hon. Medical Adviser, ME AssociationChair of the UK ME/CFS Biobank Steering Committee.

Research: A longitudinal immunological study for ME/CFS biomarker discovery

What are the UK ME/CFS Biobank team proposing to do with this funding?

They will be studying 110 ME/CFS cases (half severe, half mild-moderate) meeting all of the CDC, Canadian Consensus, and Institute of Medicine, criteria.

They will focus on detailed immunological and clinical phenotypes (subgrouping patients by immune differences, such as the number of different immune cells and cytokines, and clinical differences, such as severity).

Analyse inter-relationships (the relationship between the immune differences and differences in severity/symptoms and changes over time).

Cases will be assessed every 6-12 months, over 5 time points, to record changes in biomarker expression and link these to clinical parameters (whether their condition has gotten better, worse or remained stable) in order to analyse biomarkers at different stages of disease progression and try to identify subgroups.

Cases will be grouped according to trends in symptom severity using scores relating to pain, fatigue and functional status.

In-depth Immunological Profiling (to try and identify biomarkers) will involve:
* Phenotyping Lymphocytes (T cells, B cells and NK cells) and monocytes from the blood samples.
* Measuring the functional response of NK (natural killer) and T cells after stimulation (by a virus, for example).
* Analysing secreted cytokines from the stimulated NK and T cells.
* Genotyping the donors for MHC class 1 (molecules that trigger an immune response to a specific toxin or foreign substance) and KIR (recognise MHC class 1 cells and activates the killing response of NK cells).

They then want to determine whether changes in immune parameters come before, after or predict the changes observed in clinical presentation (changes in symptoms and severity over time).

This will be done by quantifying correlations between immunological biomarkers and by identifying biomarkers associated with changes in ME/CFS clinical status.


Significance of the study

“This study is unique for its strict inclusion criteria and detailed clinical phenotyping, adding specificity and validity to our analysis.”

“This is, to our knowledge, the first long-term prospective study of ME/CFS to incorporate both ambulatory and severe cases and to include comprehensive clinical data and in-depth immunological profiling.”

“This research will contribute to the development of better diagnostic tools and treatments.”

“The inclusion of severe cases through home visits will allow for research on a subset of patients often neglected in ME/CFS studies.”

“Because 1- 2.5 million Americans have ME/CFS, this study has the potential to improve the lives of a large patient population in the U.S. as well as advance the state of the field in the U.S. and internationally.”

“Patients and stakeholders are involved in all aspects of the research.”

More study information, here.

More Reaction

“This is great news for quality research into ME/CFS. The Biobank team has always put the needs of the patient first and it’s fantastic that their good work can now continue”

Cecilia Finnerty, Patient Representative.

“Such wonderful news for people with ME. It is a privilege to serve on the Steering Committee alongside a committed professional team who have such a heart for people with this illness.”

Hannah Clifton, Director, The ME Trust.

“ME Research UK is delighted that the team has been awarded a new grant from the NIH worth $2.1m. The funding will enable further research on those affected by ME/CFS over the next 4 years and will ensure that the UK’s first biobank of human blood samples continues to be a valuable resource for all researchers in the UK and beyond.”

Sue Waddle, Vice-Chair, ME Research UK.

“Congratulations to the London School of Hygiene & Tropical Medicine team for their grant award from the NIH. This is the most important development in UK research into ME this year and all the more so because it shows the international standing of the group. Very well deserved.”

Professor Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, University College London
 



October 2017

Individual Community Symposium talks available on the Open Medicine Foundation (OMF) YouTube Channel


http://www.meaction.net/2017/09/29/individual-community-symposium-talks-available-on-omf-youtube-channel/

The individual talks from August’s Community Symposium on the Molecular Basis of ME/CFS are now available as separate videos in a playlist on OMF’s YouTube channel.

Have a look to check out the speakers you are interested in hearing from, or the panel discussions where they answer questions from our worldwide audience.

The DVDs will be available soon and can still be ordered here.

Visit our website to learn more about the Symposium and OMF’s research.

From the OMF YouTube channel playlist –

The Community Symposium on the Molecular Basis of ME/CFS, sponsored by OMF, took place on August 12, 2017 at Stanford University. It brought together hundreds of researchers, clinicians, patients, caregivers, families, and advocates, and thousands more by livestream.

For more about the symposium, check out the following summaries:
https://www.omf.ngo/2017/08/25/community-symposium-highlights/ (shorter)
https://www.omf.ngo/2017/09/11/the-first-community-symposium-on-the-molecular-basis-of-mecfs/ (more details)

To support ME/CFS research, please donate today:
https://app.etapestry.com/onlineforms/OMF/Collaborator.html
 



September 2017

When you beckon lightning and invite it in for tea


http://www.jkrowbory.co.uk/2017/09/when-you-beckon-lightning-and-invite-it-in-for-tea/

by Jenny Rowbory

By February 2007, I had been receiving daily Nexavir injections (an antiviral) for six months and I was actually starting to see small improvements in my health for the first time in over two years of being acutely ill. But friends and relatives kept sending me newspaper cuttings of articles about the Lightning Process (LP) curing people with ME. I became under enormous pressure to do the LP (“What’s the harm in trying it?” “Don’t you want to get better?” “It has helped others so it’s worth a shot”). I was only 20 years old, vulnerable because of my desperation to get better, and didn’t know much about Myalgic Encephalomyelitis and what the illness actually was (a multi-systemic, neuroimmune illness). By that time, I also had been gaslighted by so many NHS doctors and private doctors about my illness and symptoms, that I was doubting myself. When so many people disbelieve you, you start disbelieving yourself, despite all physical evidence to the contrary. In the end, I buckled and, although sceptical, I agreed to do the LP. I was so ill and I just wanted to get better.

Ironically, I wouldn’t have even been able to get to the LP practitioner’s house (he was an NHS doctor but did the LP privately) even a couple of months previously but because of the small improvements due to the Nexavir injections, I was able to get down the stairs and lie down in the back of our car to get there. There were consequences for my body but I thought that it would be worth it.

I’m not going to go into detail about the “mechanics” of the LP; other people have debunked the methods far better than I’m currently able to. Back then, I decided to throw myself into the LP and be totally committed to doing it properly. The results, however, were nothing less than disastrous for me.

First, the fully-qualified practitioner artfully gaslighted us (a group of four patients) with what I now know is pseudoscience quackery about M.E.; it was done in such a subtle, convincing and skilful way (even experienced scientists have been taken in by it). Using “science” to explain, he told us how we didn’t ‘have’ an illness but that we were ‘doing’ an illness; it was our thoughts, behaviours, and fears about post-exertional symptoms that were causing us to stop ourselves from living normally and causing us to believe that we had symptoms and to believe that we were ill.

He then put mechanisms into place in my brain, via neuro-linguistic programming, that made my own brain automatically gaslight me constantly and stop any thoughts of symptoms dead in their tracks. He added repetitive gestures/movements/phrases that I had to continually apply to my thoughts and body in order to reinforce the programming. This is brainwashing.

It’s hard to describe being brainwashed. The next six months in 2007 after the LP are still a hazy blur to me. Not only did the neuro-linguistic programming in my brain not allow me to ever mention any symptoms to anyone, I was not even allowed to think that I had any symptoms. I wasn’t allowed to be ill anymore. I pushed and pushed myself, even when in the most excruciating pain, even when I was in heart failure or experiencing seizures or passing out, because they didn’t exist. My illness didn’t exist [even though I was extremely ill, I honestly believed that I wasn’t ill anymore, that I was cured]. It sounds ridiculously idiotic but that’s what brainwashing can do. My body was becoming more and more damaged from the enforced gradual Graded Exercise Therapy that the programming in my brain was imposing on myself. It was completely out of my control; I felt glazed over and not with it.

As per what I’d been conditioned and instructed to do during the LP training, I told everyone that I was no longer ill and that I was recovering. I’m pretty sure that I told all my friends and family that I was in recovery, that the Lightning Process had been successful and had worked. I even had a huge 21st birthday/’I’m better now’ party in a village hall, celebrating recovery from illness. Remembering it now is upsetting. I had the biggest smile on my face the whole time and looked fine to everyone but would have to frequently escape into the toilets where I would almost black out and would collapse on the floor for a while. I was in oxygen starvation from being upright and from heart failure. I was very dizzy and everything was spinning around me because of my very low blood pressure. All my muscles were screaming at me. Nobody had any idea that this was happening to me; the LP programming prevented me from being able to tell anyone or from even acknowledging my symptoms to myself. They didn’t exist because I wasn’t ill. It’s just a haze to me now.

In the following months, I kept on pushing myself, doing insane damage to my body (I pushed myself to the point where I was going on a slow 5-minute walk every few days, which was a huge deal for me considering I had been bed-bound for two years) until one day in August 2007, when my parents were away, I pushed myself too far and went on a longer walk. At the end, my body failed and packed in completely; the six months caught up with me and I collapsed. I was never able to get up again. Ever since, I have been bed-bound, unable to sit up and unable to speak, struggling to breathe and swallow. The permanent organ damage that was done during March to August 2007 during the self-imposed GET due to the LP brainwashing, was devastating. I never recovered from it and my health has only deteriorated since. The hold that the brainwashing had over me was broken pretty quickly and thoroughly that August, thank goodness. But I can’t remember much from those six months.

Today it is being reported in the news that an experimental trial of the LP on children and teens with M.E. has been successful. The fact that the results are based on the children and teens themselves saying that they have recovered, is extremely worrying to me. During the six months that I was brainwashed with the LP, I would have said the same: that I was cured, that I was recovering and that the LP was successful. Those poor children. They are even more vulnerable than I was. What they have been subjected to is nothing short of abuse and should never have been allowed to happen in the first place.

Whatever you do, please don’t send news articles about the Lightning Process to anyone with M.E. It’s a dangerous thing. Don’t beckon lightning and invite it in for tea; it will burn your house to the ground with you inside until you’re nothing but ashes.
 



September 2017

The Emotional Toll Of Not Being Heard


http://www.meaction.net/2017/08/31/the-emotional-toll-of-not-being-heard/

By Christina Baltais

This story won’t be particularly unique or shocking to anyone living with ME. Every single one of us has a plethora of stories like this, and far worse than this. It has happened so many times over the last 11 years. What shocks me is the degree to which it still occurs and manages to affect me, no matter how much time I spend trying to advocate for ME.

I was out to eat with extended family members. It was my first outing in weeks, since I had been housebound due to symptoms. An outing after a long period of solitary confinement is a rather momentous occasion. I was so grateful to be out of that bed, out of that bedroom, out of that house. The vibrant world that felt so far away, I now found myself immersed in, taking in everything around me like a grateful sponge. I was basically a bear emerging from a den after a long, long hibernation (minus any refreshing sleep).

When I sat down, the usual catch-up conversation ensued. Updates on my health eventually came up. I said that its been my first outing in quite some time after a rough patch. This statement could have been followed by words that were supportive/empowering/neutral, but it wasn’t. This family member went on to comment that I looked fine, and was sitting up just fine at the table right now. I responded by saying that sitting up was actually very difficult for me because I was experiencing a great deal of weakness, and would need to rest after this outing when I got home. This was followed by a comment indicating that if I was sitting up now, why couldn’t I find a job where all I had to do was sit up and type? Why couldn’t I look for jobs like that? Was I not even going to try? After all that schooling, was I just going to waste my life?

You have got to be kidding me. (And some other words that I can’t say.)

A long uncomfortable silence ensued. I felt the familiar pangs of shame, humiliation, and judgement by someone who not only knew nothing about ME, but who also did not want to listen. No one at the table said anything in my defence, their passive silence feeling like implied agreement. I honestly believe this person’s intent was good, but how disconnected from my experience could they possibly have been to not realize the impact of their words and the implications of their statements. I really embrace the importance of talking about my body and ME as a source of education, but the first caveat always has to be that my voice and experience is heard, valued, and respected. This was another case where it clearly had not been. For if anyone was connected to the experience of ME, they would understand the absolute hell a person goes through. The depths of despair and grief this disease drags you through; it was never a choice. The inner turmoil of having a heart that wants the world everyday, but having a body constantly saying no; you forfeit any control over the direction of your life. I chose ME just as much as the millions of people around the world chose ME; we didn’t. I realize I’m preaching to the choir. The point is, I should not have to spend an outing defending and proving in hopes of understanding. I’m not wasting any precious spoons on that. It just hurts so much, still, even after 11 years.

As human beings we all need to feel love and connection. There is a deep-seated need to feel unified, to have approval, acknowledgement, acceptance—-to feel connected with, intimate and loved by, other human beings. When you are already so physically isolated due to illness, situations that make you feel emotionally and socially isolated take it to an entirely different level. It adds another layer of suffering. As if I didn’t feel disconnected and like an outsider enough already. It’s situations like this that make me realize how much during these 11 years I have not been believed or heard. It’s situations like these that make me realize how exhausting it is to constantly be vying for the understanding of others.

What’s even harder is when it comes from family, as this one did. What’s even more disheartening is that this individual is also a doctor. When I was undergoing medical training myself, some supervisors I highly respected displayed a clear lack of understanding about ME. One spoke of how you have to wonder how much of “the behaviour” is learned as it runs in families. I was told to recommend to an ME patient that they strap on a backpack full of weights and jump on a trampoline to increase bone mineral density. It was explained to me how a new physical symptom could only be psychosomatic “as anxiety is common in that demographic so that is the only plausible explanation for that extreme symptom.” Unbeknownst to them, I had ME and these comments illuminated the presumptions, assumptions, and rampant inaccuracies perpetuated by a lack of knowledge in our medical systems. They were extremely disappointing and painful to hear, as I’ve been on the receiving end of all these assumptions and exacerbating recommendations as a patient myself. The lack of knowledge and understanding is systemic; experiencing and bearing witness to how ME has been relegated to the margins of our medical system has been traumatic.

The history of ME’s constant invalidation and abhorrent lack of research funding is disturbing. I wish people would listen. I wish they would trust our experiences and accounts of our own bodies, or in some cases, of our children’s bodies. How healing the words, “I believe you,” would would be for all of us. Sometimes, the emotional toll feels worse than the actual disease itself.

We don’t know when the pathological basis of ME will finally be understood. We should not have to wait for that, to be shown the much needed empathy and compassion which we deserve. Why it takes “proof” in order to actually listen to literally millions of voices saying the same thing over decades of time baffles me. When I think of the millions of lives lived, and some ended, in complete suffering—-without voices, it enrages me. If their suffering had been validated and acknowledged, even if treatment was still not available, would it not have made a difference? The injustice of it all enrages me. Anger is often a signal something is not working, and that means something needs to change. Change is possible and can come soon for all of us. Change needs to come especially for those of us who are unable to use their voices, or even read this.

There are many ways to get involved in creating change for health equality and ME awareness. Be a part of the #TimeforUnrest global impact campaign. This campaign advocates for more recognition, education, research, and funding around ME. You can help advocate for our voices to be heard, by hosting a screening of Unrest in your community. You can join the #TimeforUnrest Facebook group, and share and promote the campaign on social media. For more ideas on how to be a part of the change, click here.

Imagine how different the world’s perception of this disease could be; and for an end to the stigma and misconceptions we’ve all experienced. Imagine with research the pathological basis of ME understood, and treatments being offered. We can make this change happen, and we can make this change happen together.

About the author: Christina, 31, lives in Toronto, ON. She holds a Bachelor’s Degree in Science and has a fine arts background. She became ill with ME while completing her Bachelors. This inspired her to become a naturopathic medical doctor in order to better understand how to heal the body. One month before completing her medical degree, her ME progressed. She has been slowly recovering, using writing, music, art, and nature as a means for processing this experience.
 



September 2017

At symposium, researchers and patients examine molecular basis of chronic fatigue syndrome


(Again, if only they would say ME, Myalgic Encephalomyelitis, instead of CFS)

https://www.omf.ngo/2017/08/25/community-symposium-highlights/

Posted on: August 25, 2017

by Raeka Aiyar, PhD

Ron Davis, PhD, calls chronic fatigue syndrome (also known as myalgic encephalomyelitis, or ME/CFS) the “last major disease about which we know almost nothing.” That’s because at least a million Americans are debilitated by ME/CFS, and yet no clear cause is known, no treatments are approved; funding, understanding, and awareness are disproportionately limited. Yet thanks in part to a boost in advocacy and fundraising efforts, there is increasing cause for hope, many researchers and patients believe.

Earlier this month, several hundred researchers, doctors, patients and caregivers joined forces for the Open Medicine Foundation’s Community Symposium on the Molecular Basis of ME/CFS chaired by Davis at Stanford University, with another 2,700 worldwide joining online. Known for his contributions in biotechnology and genomics, Davis has rerouted his career to tackle this disease and save his critically ill son. He’s brought together an interdisciplinary team of collaborators, many of whom spoke at the symposium. “The Human Genome Project taught us that we can take on a large project like this and succeed,” Davis said.

The event focused on a new understanding of ME/CFS as a molecular disease. Davis’ team has taken this perspective in an omics and big data study of severely ill patients. Wenzhong Xiao, PhD, Davis’ collaborator at Massachusetts General Hospital and Harvard Medical School, presented a preliminary analysis of this dataset, including efforts to use it to define biomarkers and predict causative factors.

Davis presented his technology-driven approach to unraveling ME/CFS, noting that if sequencing technologies had been available at the time, “we would have figured out AIDS in a couple of weeks.” He presented a nanotechnology developed at the Stanford Genome Technology Center that can successfully distinguish patient blood samples from healthy ones, based on their response to stress in the form of increased salt concentration. This presents the potential for a blood-based diagnostic – a transformative prospect for a field reliant on lengthy, subjective diagnoses.

A core issue in ME/CFS is massive energy depletion, so much research is focused on the mitochondria, the organelles inside cells that are responsible for energy generation. Keynote speaker and mitochondrial physiologist Robert Naviaux, MD, PhD, from the University of California, San Diego, suggested that the ‘cell danger response’ to stressors, which prevents cells from returning to baseline function until healing is complete, is prolonged in ME/CFS, which is consistent with observations of reduced metabolism in patients.

Naviaux’s theory also syncs with reports of common infections triggering the development of ME/CFS. In fact, Davis’ cell-free DNA sequencing revealed no exceptional types or levels of pathogens in patients. “It’s not the stressors themselves, but an inability to resolve them and heal afterwards,” Naviaux said.

Stanford immunologist Mark Davis, PhD, presented evidence suggesting that ME/CFS could be an autoimmune disease: using single-cell sequencing, his lab has observed an increase in patient T cells that share a particular target, a signature of an immune response. He said he is investigating what these T cells are targeting.

Nobel Laureate Mario Capecchi, PhD, from the University of Utah, presented a study in mice that shows a connection between the immune system and the brain in a genetic condition that shares some traits with ME/CFS. He also noted how important patient participation is in studying any disease, and how impressed he was with the ME/CFS patient community.

With so much patient engagement, collaboration, and community spirit – not to mention the many theories and new datasets, researchers say it is an exciting time for the field. Many attendees said they were amazed at how much has been accomplished with such scant resources. The event closed with a standing ovation.

To support ME/CFS research, please donate to OMF today. For more about the symposium, check out the YouTube video of the event or read coverage in The Mercury News.

A version of this post originally appeared on the Stanford Medicine Scope Blog.



August 2017

New Scientist: Blood biomarkers may help diagnose chronic fatigue syndrome


(If only they would say ME, Myalgic Encephalomyelitis, instead of CFS)

https://www.newscientist.com/article/2142350-blood-biomarkers-may-help-diagnose-chronic-fatigue-syndrome/

By Andy Coghlan

Inflammation biomarkers may help doctors diagnose chronic fatigue syndrome (CFS), a poorly-understood condition in which people feeling continually exhausted. These biomarkers could also give new clues to what causes the condition, and how to treat it.

The biomarkers were discovered when a team of researchers screened the blood of 192 people with chronic fatigue syndrome for cytokines – substances used by the immune system to control inflammation. The team compared the levels of 51 different cytokines in the people with CFS and 392 people who didn’t have the condition, and found that 17 cytokines rose in tandem with how bad a person’s CFS was.

“These 17 go up by various degrees in a straight line with severity,” says José Montoya, of Stanford University.

Overall, only one cytokine was consistently higher in people with CFS. But when severity was taken into account, the other 16 emerged from the analysis as being linked to the condition. For example, three-times as much of the appetite hormone leptin, which is part of the cytokine family, was present in people with very bad cases of CFS.

Biological basis
It is not yet clear whether the increase in inflammation markers could be a cause or result of the condition.

However, Montoya says the results support mounting evidence that CFS is a physiological condition, not a psychosomatic disorder. “There’s no question this is something that’s biologically based,” he says. “This is a disease that does not get cured with psychological treatments, counselling or anti-depression drugs.”

Montoya’s team want to use the biomarkers to develop ways to diagnose CFS, also known as myalgic encephomyelitis, and monitor its severity. These cytokines may also help identify new CFS treatments that dampen inflammation, Montoya says.

“The results and how they were obtained are encouraging, as finding markers for subsets and categorisations within the illness is much needed for future research and treatments,” says Chris Armstrong, of the University of Melbourne, Australia.

Dampening inflammation
Armstrong’s own team have found that the fatigue of CFS may be caused by disrupted metabolism and energy production in the body. “The metabolic changes we found suggest a physiological stressor in the body is affecting the cells,” he says. “The cause of that stress is unknown, but is likely to be immune-based given the mounting evidence in that direction – this new study included.”

A team in Norway has had some early success in treating CFS by targeting the immune system and reducing inflammation. They have been using a drug called rituximab to wipe out the white blood cells that may make inflammatory antibodies.

Montoya says it’s unclear what causes the increase in cytokines they have seen in CFS, but he thinks something is triggering inflammation in the body – possibly an infection like the herpes virus.

Journal reference: PNAS, DOI: 10.1073/pnas.1710519114
 



August 2017

A letter to Sir Andrew Dillon , Chief Executive, NICE

By Greg Crowhurst


http://carersfight.blogspot.co.uk/2017/07/a-letter-to-sir-andrew-dillon-chief.html

Stonebird

27th July 2017

Sir Andrew Dillon,
Chief Executive,
NICE

Dear Andrew Dillon,

Re : Myalgic Encephalomyelitis

I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry.

In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder.

The response, in a letter to me, dated March 2nd, from the Co-Chairs of the Expert Reference Group for JCPMH Guide on Commissioning for MUS and the Co-Chairs of the JCPMH claimed that the: "The content of the MUS guide is fully in line with NICE guidelines and with current practice. Should the relevant NICE guidelines alter, or the evidence in this area change, then we will revise the guide accordingly."

On March 15, NICE assured me that CG53 does not list ME as a somatoform disorder. Therefore the MUS guidelines cannot be correct.

I raised the misinformation in the JCPMH Report with the Department of Health, who confirmed that the Government recognises the WHO classification of ME as a neurological disease. They advised me to take the issue up personally with you.

I am interested to know what you can do to correct the misinformation that the JCPMH has given to Commissioners, especially given the serious potential implication in regard to the current consultation on CG53?

I also have the following questions, given that NICE has confirmed that it does not consider ME to be a Somatoform Disorder:

1. Can you tell me why NICE itself lists ME under "Depression and anxiety disorders" on the IAPT webpage and can you reassure me that it will be removed? That surely is as great a misrepresentation of ME as the JCPMH document, especially given the recognition in CG53 that “the physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus and congestive heart failure .”
https://www.nice.org.uk/about/what-we-do/our-programmes/nice-advice/iapt

2. Can you explain the nature of IAPT’s involvement in ME, especially in light of the the CDC’s recent decision not to recommend CBT and GET?
http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/

3. Can you tell me what role, if any, IAPT played in the drafting of the recent CG53 Surveillance Document, which has been heavily criticised by all major ME Charities and thousands of patients for:
* its adherence to the widely disputed CBT/GET paradigm, which has been shown to make patients, especially the most severely affected, much worse. http://stonebird.co.uk/psurvey.pdf
* its many references to the universally discredited PACE Trial
* its reliance upon vague diagnostic criteria that do not clearly identify or separate ME from mental health Chronic Fatigue (WHO F48). A wide definition helps no one; surely it is time to acknowledge that ?
* its scant regard for biomedical evidence
* its extraordinary decision not to update the 10 year old guidance which not only was condemned as “unfit for purpose” at the time, but continue to deny patients, like my profoundly physically ill wife, equal access to health care
* its failure to accurately represent international clinical practice
* its failure to remove outdated treatment recommendations and its pronounced self-circular psychiatric bias.

4. I am very curious to know the composition of the Topic Experts and their knowledge base and impartiality. What biomedical representation, if any, did you have? What clinical input, outside of the biopsychosocial school, was involved for unbiased appraisal of the biopsychosocial content? Can you tell me who the Topic Experts were? Were any of the Royal College’s involved?

5. Can you tell me why NICE only gave stakeholders two weeks to respond to the 56 page Surveillance document, making it incredibly difficult for those people who have ME themselves or full time carers, to have enough time to contribute adequately or at all.

6. Can you explain why NICE has relied heavily on an unfounded psychiatric theory of ME that is nothing more than that, with no real evidence itself, while ignoring the more than 9000 published papers that have been published world wide, detailing the biomedical abnormalities in ME?

7. Can you explain, given the statement in 2014 by Professor Mark Baker, Director of the Centre for Clinical Practice, at a Forward- ME meeting, that the Guideline failed to address the real issues in ME/CFS, does not promote innovation and has had a disappointing impact on specialist care and commissioning issues, why NICE has continued to stick to its outmoded, inappropriate, dangerous guidance?

http://www.meassociation.org.uk/2014/07/forward-me-meeting-and-the-nice-guideline-on-mecfs-statement-by-the-me-association-10-july-2014/

The Surveillance document does nothing, in my opinion, to challenge the misperception that ME is a mental illness, in fact it's decision to come off the static list, not for medical reasons, but because of the FITNET CBT/GET Trial reinforces the apparent psychosocial bias of the whole document and attitude of NICE.
If CG53 continues to contribute to a situation where people with ME are:

* misinterpreted as having a mental health issue
* where biomarkers are not sought for and relevant tests are proscribed
* where health professionals of every level are misinformed and their awareness skewed wrongly towards a biopsychosocial interpretation of a serious physical disease with ignored multi-system dysfunction, endangering lives and leading to mistreatment, misinterpretation, neglect and harm
* where the guidance on Severe ME fails to recognise the terrible suffering and multiple physical symptoms patients experience, making it dangerously irresponsible. http://www.stonebird.co.uk/principles%20of%20care.pdf
* where ME is still not separated from and confused with mental health Chronic Fatigue and other poorly diagnosed diseases
* where services are geared towards a psychiatric diagnosis of wrong illness thought and deconditioning
* where patients are offered treatments that are inhuman, cruel, inappropriate and dangerous, because they are in direct denial of their physical reality- the potential for harm is enormous and terrifying in ME

then surely that is in contravention of your obligations under the Human Rights Act and the Equality Act?

The ME Community has been insisting for years that CG53 is not and never has been appropriate for patients with Myalgic Encephalomyelitis; the way forward is for ME to have its own biomedical Guideline and pathway, categorically without psychiatric interpretation and involvement.

Sincerely,

Greg Crowhurst
http://www.stonebird.co.uk/
 



July 2017

CDC removes CBT and GET as recommended treatments for ME/CFS


http://www.meassociation.org.uk/2017/07/cdc-removes-cbt-and-get-as-recommended-treatments-for-mecfs-11-july-2017/

In America, the Centers for Disease Control and Prevention (CDC) has updated its website information for ME/CFS, improving diagnostic criteria and removing previous recommended treatments – CBT and GET.

While it seems that we must wait to see if this new information is reflected in updated guidance for medical professionals, it is nonetheless being heralded as an important development.

Yesterday, in the UK, NICE published its consultation document which confirmed the recommendation to take no action with regards to the current guideline.

The ME Association is protesting this decision and is currently considering its written response as a stakeholder in the consultation process.

We feel there are many aspects of the current guideline that warrant review including the continued recommendation of CBT and GET.

The ME Association’s online petition ‘The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision‘, has attracted over 4,000 supporters in less than 24 hours.

It will close on Monday 17th July at 5pm, when we will present it to the review committee for delivery to Sir Andrew Dillon (chief executive, NICE guidance executive).

David Tuller in his latest blog, Trial By Error: The CDC Drops CBT/GET, explains in more detail what has happened at the CDC and why this may herald an important and fundamental change for ME/CFS.

We have selected pertinent extracts from his blog, and reproduced them below:

“Just as The Lancet has published more “evidence” for graded exercise, the CDC has moved decisively in the opposite direction. In revamping the information on the part of its website geared toward the general public, the agency has “disappeared” all mention of CBT and GET as treatment or management strategies. Patients and advocates have long pushed for this step, as did Julie Rehmeyer and I in a New York Times opinion piece in March. Although the revised text is dated as having been reviewed on May 30th, it apparently went live sometime during the first week of July. (The CDC has still not revised the pages designed for health care providers, although old information has been removed. The agency calls the illness ME/CFS.)”

“For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website. Given the agency’s stature, she added, the decision could have widespread impact, not just in the U.S. but internationally as well. Many health care providers and institutions here and abroad look to the CDC for guidance in public health matters.”

“So many patients have been made worse by the treatments,” said Dimmock, who became an advocate after her son became seriously ill several years ago. “While there is more to be done, removing these recommendations is a significant step forward in protecting ME patients from harm.”

“In the revision, the CDC website has dropped the agency’s 1994 definition of the illness. The new definition, based on the one proposed in a 2015 report from the Institute of Medicine (now the Academy of Medicine), requires the presence of “post-exertional malaise.” In the 1994 definition, that was only one of eight optional symptoms. The immediate implication of the shift is that GET should likely be considered contraindicated, given the premium this intervention places on steadily boosting activity levels. The form of CBT prescribed in PACE could also be contraindicated, since the ultimate goal of that intervention is likewise to increase activity. (The CDC has not adopted the name proposed by the IOM report, “systemic exertion intolerance disease.”)”

“In addition to symptomatic relief, the revised CDC website suggests such management strategies as a balanced diet, nutritional supplements and complementary medicine.”

“Of course, avoiding “push-and-crash” is what patients already do when they practice pacing. The “push-and-crash” language itself appears to be closely aligned with the arguments provided by the PACE investigators and their colleagues; many patients might describe their experiences differently. Nevertheless, removing the CBT/GET recommendations is a welcome step, if overdue. For years, patients and advocates pointed out the problems with PACE and related research, and also cited the evidence that too much exertion caused harm because of physiological abnormalities, not the deconditioning presumed by CBT and GET. But until now, the agency refused to make the necessary changes.”

“The CDC has another urgent obligation: To communicate with the U.K.’s National Institute for Health and Care Excellence, which develops clinical guidelines for various medical conditions. NICE is currently debating whether or not its recommendations for the illness—which it calls CFS/ME–need to be reviewed; of course, these recommendations include CBT and GET as indicated treatments. NICE is soliciting input this month from stakeholders, but the expert panel assessing the situation has apparently made a provisional decision that no review is required.”

“The CDC has a long history of collaborating with key members of the PACE team and others in the U.K. medical and public health establishments; it is not surprising that prescribing CBT and/or GET should have become standards of care in both countries. It is now incumbent on U.S. public health officials to alert their British colleagues, including those at NICE, that they have just abandoned these longstanding recommendations. They should also explain why they have taken that major step, and why NICE should consider doing the same. (More on the NICE guidelines later this week.)”

David’s latest blog can be read in full, here.
 



July 2017

THE SMILE TRIAL (part 1) – Author: johnthejack

Why the trial should never have been allowed in the first place.


https://johnthejack.com/2017/07/02/the-smile-trial-part-1/

There is no evidence the Lightning Process (LP), a mish-mash of elements of cognitive behavioural therapy, neurolinguistic programming, hypnotherapy, life coaching and osteopathy, is anything other than quackery. For decades Phil Parker has made claims for its efficacy, including as a treatment for myalgic encephalomyelitis (ME), but no proper trial has ever supported these claims.

The Advertising Standards Authority (ASA) guidance is clear:
To date, neither the ASA nor CAP has seen robust evidence for the health benefits of LP. Advertisers should take care not to make implied claims about the health benefits of the three-day course and must not refer to conditions for which medical supervision should be sought.

There are people who claim to have been helped, of course, but such claims are made for all bogus therapies. It seems that some people are simply amenable to these interventions. In addition, perhaps there are those who have become stuck in a rut, experiencing a generic chronic fatigue, believing themselves to have ME, and who are helped to kickstart their lives again by the LP. Since there is no biomarker for ME, diagnosis of the illness can be difficult: 40% of patients in an ME clinic may not actually have ME.

There is currently no treatment for ME, so it is understandable that some patients would be easy prey for and would seek more information about interventions hawked about with exaggerated claims.

Parents of children with ME were apparently contacting the charity Association of Young People with ME (AYME) (1) and asking whether it was worth trying the LP. Bewilderingly, Esther Crawley, a Bristol paediatrician and then medical adviser to AYME, instead of telling patients and parents that the LP had no scientific basis and was not worth the considerable amount of money it costs, decided to do a trial. Just as bewilderingly, the SMILE trial received funding and ethical clearance.

First, this trial should never have been allowed. Good science is not just about evidence, but about plausibility, so any such trial immediately gives a spurious credibility to the LP. Asking a question, even sceptically, can offer an implicit endorsement of its premises.

Second, it was the first study of any kind to use the Lightning Process, and it was doing so with children. There had been no opportunity to measure harms: there have been reports of patients who do not respond to the LP who then blame themselves and in desperation contemplate killing themselves. Exposing vulnerable adolescents to such a potential risk would seem particularly irresponsible.

Third, LP patients are made to accept a number of onerous conditions (such as taking responsibility for their illness) before taking the course. It is ethically questionable to ask trial participants to agree to such conditions in order to take part in a trial of a possible treatment for their illness. Making these demands of children would seem even more ethically dubious.

Fourth, patients are told to ignore their symptoms and to resume normal activity (from SMILE study):
‘It has been a bit confusing, I have to say, because obviously we have got the [Lightning Process practitioners] approach, where, “Right, finally, done this, now you don’t need to do the pacing; you can just go back to school full time.” I think, the physical side of things, YP9 has had to build herself up more rather than just suddenly go back and do that’.

Research, backed up by patient surveys, shows the harms caused by exertion in patients with ME (see Kindlon). The recent report to the US Institute of Medicine found post-exertional malaise to be so central to the illness that it suggested a new name: systemic exertion intolerance disease or SEID. Even in disputed clinical trials such as PACE which use graded exercise therapy, patients are monitored by physiotherapists and nurses and plan a gradual increase in activity. Here service providers with no professional qualifications simply tell child patients that after three sessions in three days they should return to normal activity. It is deeply irresponsible.

Fifth, to anyone with genuine ME, that is ME as defined by the International Consensus Criteria, the Lightning Process is a form of torture. It is a physical torture simply to complete the course, again from the SMILE study:
In addition to specialist medical care, children and their parents in this arm were asked to read information about the Lightning Process on the internet. They then followed the usual LP procedure (reading the introductory LP book or listening to it in CD form) and completing an assessment form to identify goals and describe what was learnt from the book. On receiving completed forms, an LP practitioner telephoned the children to check whether they were ready to attend an LP course. The courses were run with two to four children over three sessions (each 3 hours 45 minutes) on three consecutive days.

That is a very heavy burden. The homework is taxing enough but then to undergo 3 sessions of almost 4 hours each on 3 consecutive days is immense. The effort, the intensity and the busyness, would be punishment to anyone hypersensitized by the illness.

It is also a form of emotional torture as fundamental to the process is that patients take responsibility for their health, their illness and their recovery, from here, here, here and here:
LP trains individuals to recognize when they are stimulating or triggering unhelpful physiological responses and to avoid these, using a set of standardized questions, new language patterns and physical movements with the aim of improving a more appropriate response to situations.

* Learn about the detailed science and research behind the Lightning Process and how it can help you resolve your issues

* Start your training in recognising when you’re using your body, nervous system and specific language patterns in a damaging way

What if you could learn to reset your body’s health systems back to normal by using the well researched connection that exists between the brain and body?

the Lightning Process does this by teaching you how to spot when the PER is happening and how you can calm this response down, allowing your body to re-balance itself.

The Lightning Process will teach you how to use Neuroplasticity to break out of any destructive unconscious patterns that are keeping you stuck, and learn to use new, life and health enhancing ones instead.

The Lightning Process is a training programme which has had huge success with people who want to improve their health and wellbeing.


This responsibility is an enduring one: patients must continue to apply the training to their lives after their course and accept that improvement in their health lies entirely within themselves.

To take chronically ill patients, who want only to get better, and spend three days attempting to brainwash them into believing their illness and recovery lie within their control is deeply unethical. Adult patients in the days after enduring this nonsense, blaming themselves for lack of improvement, have been left in such depths of despair as to want to take their own life. To expose chronically ill adolescents to such a danger was extraordinarily irresponsible.

Of course, with the broad criteria and the self-selection involved in determining who took part in the trial, it may well be that not a single participant actually had ME but had instead simply ‘chronic fatigue’. That would be even worse, though: the results may show that the LP has some effect with ‘chronic fatigue’ but would be used to claim effectiveness for patients with ME. Many children who genuinely do have ME could be gulled into paying for this nonsense only, potentially, to do themselves considerable harm.

This trial was unnecessary, gave spurious credibility to quackery and was unethical. It was also very poorly conducted, as will be shown in part 2.

AYME has now ceased trading and its role has effectively been taken over by Action for ME https://www.actionforme.org.uk/children-and-young-people/introduction/
 



June 2017

Good News for ME patients in Northern Ireland


From the Hope 4 ME and Fibro Northern Ireland Facebook announcements page, posted on June 1

https://www.facebook.com/Hope4MEFibro/?hc_ref=PAGES_TIMELINE&fref=nf

We have some very important news to share, with permission from the Health and Social Care Board Lead Commissioner for ME and fibromyalgia, Mr. Iain DeBoys.

Dr. Ian Clements, Chairperson of the Health and Social Care Board has confirmed, ALL 365 General Practitioner (GP) practises in Northern Ireland will receive new updated informative on ME and fibromyalgia, including biomedical research, confirming the very physical nature of the diseases. This decision was agreed, by DOH officials attending the Stormont conference, immediately after the speaker's presentations!

Further, more detailed information, will be posted as soon as possible, when confirmed.

We expect this breakthrough to happen within a maximum of 8 weeks after further negotiations with the commissioners and Public Health Agency.

Hope 4 ME & Fibro Northern Ireland, has been bringing world experts and researchers from around the world to N.I. since 2011 to educate decision makers, effectly, it has taken six years to bring us to this welcome and much needed move by the Department of Health.

We can again thank this year's speakers at our Seeking Solutions for ME and Fibromyalgia' conference,

Professor Mella, Linda Tannenbaum, David Tuller and Dr. W. Weir, Dr. Christine McMaster and the others before them.

Previous educational conference speakers have included Professor Mark VanNess, Dr. Derek Enlander, Dr.Judy Mikovits, Dr. Vance Spence (MERUK) Dr. Gregor Purdie and Dr.Charles Shepherd (MEA), Dr. Pamela Bell, Louise Skelly (P&CC) and Dr. Joe McVeigh, who have presented educational information and groundbreaking research to the heart of our government and healthcare decision makers in Northern Ireland.

Thanks too to Invest in ME and the Irish ME Trust who have helped and supported our efforts in bringing international experts to Northern Ireland.

A more detailed report is being complied on the speaker's presentations at our recent 'Seeking Solutions for ME and Fibromyalgia' educational event, held in Stormont government headquarters, Belfast, 30/5/2017.

(A short summary of the conference can be found at –
http://hope4mefibro.org/seeking-solutions-conference/)
 



June 2017

12th Invest in ME International ME Conference 2017


http://www.investinme.eu/IIMEC12.shtml

This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME. IIMEC12 will be the twelfth conference and has attracted researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.

The conference is a full day event on Friday 2nd June from 09.00 to 17.30.

The agenda for the day can be found by clicking here.

Speakers for the conference include –

Dr Ian Gibson, Former Dean of Biological Sciences, University of East Anglia

Prof Ian Charles, Director of Institute of Food Research, Norwich, UK

Dr Vicky Whittemore, National Institutes of Health, USA

Professor Sonya Marshall-Gradisnik and Professor Donald Staines, Griffiths University, Australia

Professor Nancy Klimas, Director, Institute for Neuro Immune Medicine, Nova Southeastern University, Miami, USA

Dr Jakob Theorell, Department of Medicine, Karolinska Institutet, Stockholm, Sweden

Dr Jo Cambridge, Principal Research Fellow Inflammation, Div of Medicine Faculty of Medical Sciences, UCL, UK

Professor Simon Carding, Professor of Mucosal Immunology at UEA-MED and leader of the Gut Biology Research Programme, Norwich, UK

Associate Professor Mady Hornig, Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA

Professor Olav Mella, Haukeland University Hospital, Bergen, Norway

Dr Øystein Fluge, Department of Clinical Science, Haukeland University Hospital, Bergen, Norway

Professor Warren Tate, University of Otago in New Zealand

Professor Ron Davis, Director Stanford Genome Technology Center, Palo Alto, California, USA

Happily, for those of us unable to attend, the talks will be recorded and available to purchase on DVDs.
 



May 2017

12th May is ME Awareness Day

The Ambiguous Term “ME/CFS” Has Become a Problem for Research


https://www.facebook.com/notes/jerrold-spinhirne/the-ambiguous-term-mecfs-has-become-a-problem-for-research/1527608180644089/

JERROLD SPINHIRNE - WEDNESDAY, 10 MAY 2017

For International Awareness Day, May 12, 2017

Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research of the neurological disease myalgic encephalomyelitis, ME, ICD G93.3.

Additionally, patients diagnosed with chronic fatigue syndrome, CFS, and not meeting the more specific diagnostic criteria for ME, are also adversely affected by the use of the mixed “ME/CFS” term in research. Non-ME CFS while combined with ME under a single term cannot rationally be researched to identify other coherent patient groups, which could then be renamed and removed from the more encompassing CFS group. This rational strategy for resolving the current impasse in research was called for in the 2011 ME International Consensus Criteria paper, published in the Journal of Internal Medicine, and the 2012 International Consensus Primer, based on the ME-ICC.

The IC Primer states:

The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

The 2011 ME-ICC:
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

The 2012 IC Primer:
http://www.name-us.org/defintionspages/DefinitionsArticles/2012_ICC%20primer.pdf

Patients can use this convenient guide, prepared by the MEadvocacy organization, to determine if they meet the ICC criteria for ME.
http://www.meadvocacy.org/the_international_consensus_criteria_what_is_it_do_i_fit_the_criteria

Understanding the problems created by combining the two disparate terms ME and CFS together as a single mixed diagnosis “ME/CFS” requires an understanding of how the two terms originated.

Myalgic Encephalomyelitis

The term “encephalomyelitis” was used in a 1956 paper by Dr. A. Melvin Ramsay describing an outbreak of infectious disease at the London Royal Free Hospital in 1955, “Encephalomyelitis simulating poliomyelitis,” published in the Lancet. In the same May 26, 1956 issue of the Lancet, an editorial attributed to Dr. E.D. Acheson suggested use of the name “benign myalgic encephalomyelitis.”

The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term "benign myalgic encephalomyelitis" may be acceptable. It in no way prejudices the argument for or against a single or related group of causal agents; and it does describe some of the striking features of a syndrome characterized by (1) symptoms and signs of damage to the brain and spinal chord, in a greater or lesser degree; (2) protracted muscle pain with paresis [partial paralysis, muscle weakness] and cramp; (3) emotional disturbances in convalescence; (4) normal C.S.F.; (5) involvement, in some variants, of the reticuloendothelial system [part of the immune response system]; (6) a protracted course with relapses in severe cases; and (7) a relatively benign [death was not immediate] outcome. It remains to identify this syndrome more precisely; but we believe its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever, the forms of epidemic encephalitis already described, and, need it be said, hysteria.”
http://www.name-us.org/DefintionsPages/DefinitionsArticles/Lancet1956.pdf

It is important to note that fatigue of any kind is NOT mentioned in this early description of ME, based on the systematic clinical observation of patients with related symptoms identified during outbreaks of disease.

Acheson, writing later in a 1959 paper based on clinical observations made during 14 related outbreaks of disease, again did not mention fatigue of any kind as a commonly observed or diagnostically useful symptom:

"All the outbreaks shared the following characteristics: (1) headache; (2) myalgia; (3) paresis [muscle weakness, partial paralysis]; (4) symptoms or signs other than paresis suggestive of damage to the brain, spinal cord or peripheral nerves; (5) mental symptoms; (6) low or absent fever in most cases; (7) no mortality. In addition, (1) a higher attack frequency in women; (2) a predominantly normal cerebrospinal fluid, and (3) relapses have occurred in almost all outbreaks. In eleven of the fourteen epidemics symptoms which suggest activity of the disease have persisted for months or years in a few cases, and in eight instances there was an apparent predilection for the nursing or medical professions. Lymphadenopathy was a feature in four outbreaks."
http://www.name-us.org/DefintionsPages/DefinitionsArticles/Acheson1959.pdf

Neither does Dr. Melvin Ramsay in his 1986 case definition of ME mention fatigue of any kind:

A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course
."
http://www.name-us.org/DefintionsPages/DefRamsay.htm

In the last paper published by Ramsay in 1990, and with Dr. Elizabeth Dowsett, this was the ME research case definition they used:

"We adopted the following clinical criteria for investigation of ME: a syndrome commonly initiated by respiratory and/or gastro-intestinal infection but an insidious or more dramatic onset following neurological, cardiac or endocrine disability occurs. The pathognomonic features are: a complaint of general or local muscular fatigue following minimal exertion with prolonged recovery time; neurological disturbance, especially of cognitive, autonomic and sensory functions; variable involvement of cardiac and other systems; a prolonged relapsing course."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/

The symptom of post-exertional muscle fatigue used here is very different from the symptom of perceived general fatigue, the subjective feeling of tiredness, that is used as the basis for making a CFS diagnosis. Muscle fatigue can be objectively measured. Perceived, general fatigue can only be evaluated by psychometric questionnaires – an important distinction.

People with ME may experience episodes of profound fatigue, but many people with ME do not have a feeling of persistent, chronic fatigue. Dr. Elizabeth Dowsett said in an 1992 interview:

"One of the most striking features of ME is that the patient is not tired all the time! Extreme and sudden variability of energy levels both within and between episodes of illness differentiate this syndrome from other diseases associated with fatigue. One can only deplore the current fashion in the United States as well as the United Kingdom to redefine and rename a disability which has been clearly described in the literature for at least 100 years."

"There is nothing to be said in favour of the American acronym CFIDS (chronic fatigue immune deficiency syndrome) with its connotation of a primary immune dysfunction. The term 'chronic fatigue syndrome' recently adopted in this country also is nonspecific and non-descriptive because most of the definition is based on a vast number of exclusions (some of which, for example, endocrine disturbance, are actually found in ME)."

"'Post-viral fatigue syndrome', another British name, describes one essential feature (the association of the illness with viral infection) but gives the impression that the infection was antecedent rather than, as we now know, persistent. I prefer to use the more specific term 'myalgic encephalomyelitis' as it emphasizes the essential encephalitic component of the illness, the muscle pain, and the close clinical and epidemiological similarity to poliomyelitis
."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2399326/?page=1

To read the rest of the article, please go to –
https://www.facebook.com/notes/jerrold-spinhirne/the-ambiguous-term-mecfs-has-become-a-problem-for-research/1527608180644089/
 



May 2017

25% ME Group – ME Awareness (May) Information –

http://www.25megroup.org/campaigning_awareness.html#aware17

The care needs of people with Severe ME –
http://www.25megroup.org/Campaignging/Awareness%202017/CARE%20NEEDS%202017%20A3.docx

With so much misinformation, misinterpretation and misunderstanding about ME in the public domain, it is important that Carers and Agencies providing care are in receipt of accurate and safe information on how to provide care in the best way.

First and foremost it is essential to know that Myalgic Encephalomyelitis is a serious physical disease, with complex multi-system dysfunction.

Enormous harm can be done by someone who is not fully aware that the person with Severe ME is seriously physically ill and that they are not going to be “made well” by changing their thoughts or increasing their activity in a graded way.

When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine. Harm, even death for some, may follow poor treatment, care and ignorance. The physical frailty and the high risk of deterioration, of someone with Severe/Very Severe ME, cannot be exaggerated nor adequately described. You need to take the greatest of care.

The most important aspect of caring for a person with Severe Myalgic Encephalomyelitis (ME) is the 'how' of caring; the basic core beliefs the carer has about caring and the person to be cared for. What the carer believes will subtly or overtly impact on how caring is provided and has a huge effect on the relationship, quality of care and health of the person receiving the care.

The basic principles behind Severe ME-aware care are:

1. Never define the person by their behaviour.

2. Acknowledge the serious and severe physical illness underlying the person’s symptom experience.

3. Adhere to a strictly defined definition of ME (The International Consensus Criteria).

4. Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.

5. Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.

6. Honour what the person says regarding their physical and cognitive needs.

7. Listen to the person and to only interact at the correct time in the correct way. We call this the MOMENT approach, honouring the severe illness the person has whilst maximising the opportunity to engage safely in order to help, not harm them, when undertaking all care needs.

8. Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.

9. Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all. A flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred not goal oriented approach at all times is critical. Being aware of the after impact of any interaction is essential; that even something once achieved cannot necessarily be achieved or tolerated again or regularly or increased.

10. Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and interpretation of Severe ME, a physical disease. Psychiatry has no right to first hand intervention in this disease which requires a biomedical response and care pathway.

It is vital to ensure that that you never put any overt or covert pressure, demand or expectation to improve, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.

Why a Moment by Moment approach is required

When your whole body and head is on fire with multi- level pain and you have unimaginably complex multiple system dysfunction, resulting in complicated hypersensitivities and massive indescribable cognitive disruption, blanking out your mind, with a high risk of deterioration, just by someone being in the room with you, a Moment by Moment approach is realistically the only way that you can possibly get any of even your most basic needs met and even that is incredibly difficult and painful to achieve.

If you take the first letters of the word “M.O.M.E.N.T, you could say that it means:

M aximising
O the opportunity
M to meet
E each
N need
T tenderly

We call this the MOMENT approach.

Maximising the Opportunity to Meet Need Tenderly

If you are to care for someone at this level of illness, you must learn what is tolerable to the person, when it is more tolerable, if at all and how you might safely approach the person and engage in practical care such as cooking, cleaning, washing, shopping or more intimate care such as helping the person eat, wash, dress, move, urinate or evacuate their bowels.

Every instant counts when you are caring for a person with Severe ME. Every single movement you make, every noise you make, every activity you undertake impacts them.

In order to truly interact in the right way, you need to be committed to learn more about yourself and develop real body awareness, not only when you are with the person but when you are anywhere in the home, so that you perform everything gently, carefully, with awareness of the potential impact.

You must also develop an acute awareness of sound, movement, light, chemical sensitivity , so that you can see, feel, recognise danger instantly and so help protect the person from harm and further deterioration, by reacting quickly and effectively.

You need to notice how you do things, then determine whether you can be more careful in the way that you do them in future, so that they perhaps take less time or can be done with more care to keep noise to a minimum. It might involve slowing right down and taking longer than normal, especially in first hand, direct care.

It is surprising how loud footsteps can be and how easy it is to bang a cupboard door too loudly or cut food too noisily without any awareness that it could be quieter. Obviously no noise at all is impossible to achieve; nevertheless you must grow in awareness of how every single thing you do might inadvertently cause pain and increase in symptoms.

You need to consider how you are going to avoid chemical, perfume exposure and unnecessary harm from light; this is not as easy as it sounds.

You need to be incredibly sensitive to the person when you are moving around the home, especially the room they are in and even more especially when you are close to them. The slightest quick movement or action, cough or head scratch, unnoticeable to you possibly, can cause tremendous pain and trigger other symptoms.

With Severe ME, natural responses are foreign now.

Nothing seems as it is, for the body does not respond in the normal way to the expectations of most people in the ordinary world. Here you enter a different landscape; the terrain here needs careful investigation and traversing. You may need to adjust your assumptions and presumptions.

Here :

• rest does not bring relief
• friendly chatting and conversation are often if not always intolerable
• information is not easily received, understood or remembered
• movement leads to deterioration
• touch hurts
• ordinary light is painful to agonising
• your favourite perfume or deodorant can nauseate and harm
• even quiet noise can torment and at worst paralyse
• movement can irritate and confuse, can even cause pain
• communicating need is not easy
• speaking may even be impossible
• the possibility even of simple movement may come and go or not materialise
• the way you cook things may not be appropriate, delicious -seeming food to you, is simply not what it seems and may be inedible or harmful to the person, especially if you add ingredients not tolerated or cook with the wrong method
• gifts, unless incredibly well thought through, can lead to illness deterioration
• visitors calling unannounced may be far too much to deal with
• the telephone ringing with a friendly message may be an unintentional torture

Everything is turned on its head with Severe ME, where there is not necessarily even enough energy in the body for organs to work effectively and even things kindly, yet ignorantly done, are dangerous.

The result is isolation, from normality and people, on every level. Any interaction can literally be a torment and potential for distress and deterioration.

Nothing is simple; it is rarely obvious what to do. Follow any instructions or guidelines the person provides.

Your focus must be on the person and how they are experiencing your interaction with them. You need to be present mentally, emotionally and physically to the person. You need to be able to sense when the person cannot tolerate your contact or presence. They may not necessarily be able to tell you directly. Some people cannot speak. For others it may be unpredictable. You must learn the subtly of communication and develop understanding together.

With Severe ME everything is unpredictable and relentless, you simply cannot control the illness itself and neither can the person experiencing it themselves.

It is easy to get frustrated when the action you want to do, seemingly quite simple and easy for a well person, is impossible in that moment for the person with Severe ME.

It is a matter of waiting, looking, hoping for the best moments to arise before you can act. It is essential that you understand that the symptom experience is beyond the person’s control or you may fall into false expectations or wrong interpretations. The relationship will deteriorate if you do not understand or at least accept their inner reality, the complex, intolerable symptoms they are experiencing, the difficulties with the environment and even with you, being near them.

There is nothing more wonderful than connecting and flowing together, especially in difficult circumstances and feeling good about yourself as a carer. If you can get it right you can bring comfort and reassurance, trust and valuing to both your lives. You can genuinely help, not inadvertently harm.

Adapted from “Severe ME : Notes for Carers
by Greg Crowhurst
http://stonebird.co.uk/Notes/index.html

Ref : Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011
http://www.meassociation.org.uk/2011/07/myalgic-encephalomyelitis-international-consensus-criteria-journal-of-internal-medicine-20-july-2011/

Article produced by
Stonebird
www.stonebird.co.uk
The 25% ME Group www.25megroup.org
 



April 2017

Banned from sleeping


From The TYMES Trust website

http://www.tymestrust.org/pdfs/ttbannedfromsleeping.pdf


Hi, I’m 15 years old.

Last October I suffered a huge ME relapse. I had been under the care of a clinic, but their advice seemed to make me worse. I desperately try not to sleep through the day, as I was told by the clinic. I’m not sure if this is right, though. Should I try sleeping in the day, just a little? I really need some advice I can trust. I have stopped trusting the clinic, as their advice just doesn’t help me.

Hannah Barnes


Hi Hannah,


Rest assured, you are not alone in finding this advice counterproductive. We receive many such comments.

Sleep problems in classic ME have for many years been known to be caused by disturbance of the hypothalamus gland in the brain, which controls automatic functions of the body. One of the main problems appears to be that, like you, people with classic ME are often counselled not to sleep in the daytime even if their brain is telling them to fall asleep. This advice seems to be given out of a misunderstanding that they will not sleep at night if they have slept in the daytime. However, because of hypothalamic disturbance, they often can’t sleep properly at night anyway, so they can then end up even more short of sleep.

Dr Darrel Ho-Yen once stated that patients who seem to do best are those who take naps. Consultant microbiologist Dr Elizabeth Dowsett, one of the most knowledgeable authorities on ME (now retired) always talked of ‘living within the rhythm of the brain’ as it works to heal itself. That means following the brain’s signals. Paediatrician and ME specialist Dr Alan Franklin maintained that it was downright cruel to wake children with ME when their brain had at last managed to sleep.

Although such a sleep pattern can be inconvenient, often necessitating a reorganisation of times spent studying and doing other activities, it does seem to assist the body to return to a more conventional sleep/waking cycle over time.

In Mummies Aren’t Supposed To Cry (www.tymestrust.org/pdfs/mummiesarent.pdf) you can read an account by a mother describing how she and her son managed his difficulties sleeping. I heard from her recently with details of his substantial achievements and exciting life these days.

The worst thing can be the stress caused by worrying that one ‘should’ be asleep at night. I believe that the sleep police have a lot to answer for, using terms like ‘sleep hygiene’ as though one is dirty if one cannot sleep during the prescribed hours. Such stress prevents relaxation and makes it less likely that sleep will come. You will probably be amused by the poem about sleep that I once wrote, also in Mummies Aren’t Supposed To Cry.

With best wishes,

Jane

Jane Colby FRSA
Former Head Teacher
Executive Director
The Young ME Sufferers Trust


Dear Jane,


Thank you so much for your email!! I had tears of relief streaming down my face.

I have just read the publication you suggested, so much of it was so familiar.

I have only just started to respect my ME, after 2 years of following the clinic’s advice.

Your poem is so funny, and yet so meaningful! It will help me get through tonight if I wake up.

Thank you so much for replying, you have no idea how much it has helped!

Hannah
 



April 2017

Stanford researcher develops tools to understand chronic fatigue syndrome


http://scopeblog.stanford.edu/2017/03/30/stanford-researcher-develops-tools-to-understand-chronic-fatigue-syndrome/

(I just wish they would call the illness by its proper name: ME, Myalgic Encephalomyelitis)

Holly MacCormick on March 30, 2017

Many scientists care deeply about their work. Yet for researcher Ron Davis, PhD, the drive to decode the mystery of chronic fatigue syndrome is all-encompassing: Davis’ 33-year old son, Whitney Dafoe, has been bedridden with the disease for nearly four years.

Since his son fell ill, Davis has worked to uncover the molecular mechanisms and biochemical processes that underlie chronic fatigue syndrome, or myalgic encephalomyelitis. In 2013, Davis launched the Stanford Chronic Fatigue Syndrome Research Center with the aim of definitively diagnosing, treating and curing CFS.

Now, Davis and his team are making strides toward creating a diagnostic test for CFS. They’ve crafted a nanofabricated cube, about the size of a sugar lump, that uses 2,500 electrodes to sense electrical resistance in human cells. A recent Nature article highlighted the work:

“When Davis exposed immune cells from six people with chronic fatigue syndrome to a stressor — a splash of common salt — the cube revealed that they couldn’t recover as well as cells from healthy people could. Now his team is fabricating 100 more devices to repeat the experiment, and testing a cheaper alternative — a paper-thin nanoparticle circuit that costs less than a penny to make on an inkjet printer.

The goal is to figure out exactly what is going wrong that current tests can’t identify.

“My son can’t read. He can’t listen to music. He can’t talk. He can’t write,” Davis said in the article. “But when the doctor does a battery of tests on him, they all come out normal.”

The preliminary findings of the nanofabricated cube study, and the next round of tests using a cheaper version in the form of a thin nanoparticle circuit (shown above), could help pave the way toward a test for CFS.

“This is not an academic exercise,” Davis said. “My son is in bad, bad shape.”
 



March 2017

Science, Politics, .......and ME: A health scandal in our generation


http://amzn.eu/i0e59tt

by Dr Ian Gibson (Author), Ms Elaine Sherriffs (Contributor)

The Dedication –


To all patients suffering from ME and their families and carers. You have been let down by governments, healthcare departments, the media and by those in positions of influence who could have made a difference but have totally failed you.

From the back cover –

Few diseases can have been so maligned by false information, so manipulated by an insidious establishment-controlled ideology, or so poorly dealt with by those holding the purse-strings for research into the disease, than Myalgic Encephalomyelitis (ME).

This book examines a scandal in our generation – a scandal still being played out by corrupt, apathetic, inept or ignorant attitudes in governments and Medical Research Councils and health services.

One of the authors (Dr Ian Gibson) in his ‘ Retirement’ has written this book with a political friend (Elaine Sherriffs). Ian Gibson has a passing interest in the current political scene across the world and regularly speaks on these issues. When it comes to universal health, he has pointed out on many occasions that governments often ignore scientific evidence. ME, as described in the book, is a major problem where evidence is relegated to psychiatric explanations. It is a desperate need for scientists as far as health issues are concerned to look for biomedical evidence and ME is a major example. This book describes the political manoeuvring which features just like those in the TV programme The House of Cards in the USA & the UK which described the games that are played in both parliaments. He has previously addressed these problems in an early book in 1981 – called ‘Class, Health & Profit’.

Ian and Elaine have penetrated the murky world of politics which features in the world of ME. It is long past the time to treat this as a serious illness and the need for serious biomedical research. This will only come about when politicians and the media stop trivialising the illness.

Science, Politics …… and ME is a book which will serve as a reference for the dark times, when patients were ill-served by the clash of interests between truths and untruths. It is also a book which comes at a time where a brighter future may be in the making for people with ME and their families.
 



March 2017

Two ME Films


There are two short films about ME that have recently been produced and I would recommend them to you.

A 10 minute film on ME was shown on Carte Blanche, South Africa’s longest-running TV investigation show, on 20 February 2017. It has won plaudits from around the world for its straight talking about this illness, and choice of interview subjects – particularly Dr Ron Davis and David Tuller. The UK ME Association has made the film available on it’s website and you can watch it by clicking here.

In the other film, which lasts for 18 minutes, Dr Ron Davis presents an ME/CFS research update from his lab at the Stanford Genome Technology Centre in California, USA. The Centre has made significant breakthroughs towards understanding the molecular mechanisms of the disease and is now in a position to test chemical compounds for treatment.

The film is available to watch on YouTube, thanks to the Open Medicine Foundation – click here – and you can read a transcript of all that was said on the ME Association website by clicking here.
 



February 2017

Three New Items On The Margaret Williams website -

The Cost of Collusion?
(8 February 2017)
Margaret Williams
http://www.margaretwilliams.me/2017/cost-of-collusion.pdf

The Power Of Propaganda? (4 February 2017)
Compiled by Margaret Williams
http://www.margaretwilliams.me/2017/power-of-propaganda.pdf

Letter to the Countess of Mar from the Public Accounts Committee Chair (1 February 2017)
Meg Hiller MP
http://www.margaretwilliams.me/2017/public-accounts-committee.pdf
 



February 2017

Opposing MEGA: Our Covering Letter to Mainstream Research Funders


https://opposingmega.wordpress.com/2017/01/31/our-covering-letter-to-mainstream-research-funders/

The OMEGA petition organisers wish to thank all supporters who have added their names to the OMEGA Petition as well as heartfelt comments about the way in which they as the service recipients of ‘ME’ research wish to see that research being carried out in their name. We would like to think the OMEGA Petition can stand as a documented challenge to ‘MEGA’ illustrating that those who support ‘MEGA’ do not have the mandate they claim. The following letter has been sent to many researchers and interested parties so that they cannot claim to be ignorant of this challenge. We will only update if or when a significant change occurs which relates to this petition. The petition therefore remains open for the time being. We invite everyone to continue to share and sign the petition in support – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Letter to Mainstream Research Funders

FAO: All persons with responsibility for research grant applications

CC: Any persons with an interest in the above

NB: This is a serious matter of public interest so please acknowledge receipt of this letter and note that correspondence will be in the public domain
To whom it may concern,

This letter is to inform you that a majority of people reject calls by the M.E./CFS Epidemiology and Genomics Alliance (a project of the UK CFS/ME Research Collaborative) to support their forthcoming submissions for funding for their research proposals.

MEGA created a petition addressed to ‘mainstream research funders’ on a public petition site and this petition was publicised on internet sites of CMRC member charities representing ME patients, from 28th September 2016.

A number of valid concerns about this call for funding were not allayed by subsequent correspondence with members of the board of CMRC. Thus a counter-petition was posted on 19th October on the same petition site as used by MEGA to provide an option to register rejection of calls for mainstream funding of their study proposals.

Supporters of the counter-petition were described by a charity representative member of the CMRC Board as ‘a vocal minority’ and the Chairman of the board wrote that they were ‘baffled’ by opposition to the MEGA proposals, in spite of having read carefully considered and in some cases, quite detailed explanations of the various concerns.

The ‘MEGA’ petition was open for 35 days. It closed on the evening of 2nd November and has 2,542 signatures. The counter-petition ‘Opposing MEGA’ had 2,912 signatures at 35 days (currently over 3,000). This shows that more people rejected the call by MEGA for mainstream research funding than supported it within the same amount of time.

It is understood that the MEGA petition was a means to demonstrate the weight of support from patients for forthcoming grant applications. In that respect it has not succeeded as it is now a matter of public record that the majority of patients have cast a vote of no confidence in MEGA and reject calls for mainstream research funding applications by an alliance formed by the CMRC.

It will not suffice for MEGA or CMRC to reassure research funders that patients are represented on their steering and monitoring committees and advisory groups or that patient concerns will be taken on board. Such measures have not served the best interests of ME/CFS patients over decades past and there is no reason to suppose there will be any change in this position going forward. Indeed great harm has been caused to many ME/CFS patients with the same establishment charities involved as are currently represented in the CMRC.

In addition we are informed that the children and young persons representation will be taken from an existing group working within the University of Bristol. We must assume that this group of young people will already be involved in other trials being conducted by MEGA applicant, Professor Esther Crawley – MAGENTA and FITNET-NHS – both of which are already embroiled in controversy. These young people will, therefore, be already subjected to bias and influence.

Dr. David Tuller, academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley, explained:

“Dr. Crawley is a professor of child health at the University of Bristol. She is also currently recruiting for the MAGENTA study of graded exercise therapy for children with the illness. She is a lead player in the U.K. CFS/ME Research Collaborative, an umbrella organization that is sponsoring an ambitious Big Data effort called MEGA, now in the planning stages. While patients and advocates are desperate for the kind of top-notch biomedical and genetic research being proposed, many oppose MEGA precisely because of the involvement of Dr. Crawley and Peter White, the lead PACE investigator. (Dr. White is reportedly no longer involved in MEGA; Dr. Crawley still definitely is.)”

The PACE trial has been debunked internationally by leading clinicians and scientists, and 42 experts signed an open letter to The Lancet, condemning its egregious flaws and noting that they “have no place in published research.” The PACE trial has even been presented as a case study of bad science in graduate epidemiology seminars and at major scientific gatherings. MAGENTA relies on the PACE trial as evidence of efficacy of graded exercise therapy in adults. The PACE trial results have been shown to have been grossly exaggerated to claim positive effects of psycho-behavioural therapies, and in any case, had shown null effect at long-term follow-up. FITNET-NHS relies on a Dutch study, with methodologcal flaws, and which showed null effect of the treatment trial at long-term follow-up. As the MEGA team have consistently refused to answer all questions about PACE, and are even relying on it for funding of current treatment trials, we submit that the MEGA applicants are attempting to build a research project on crumbling foundations and should receive no further funding under any guise.

We would draw your attention to a number of parliamentary questions raised by Kelvin Hopkins MP regarding matters of conduct, policy, and funding, as these relate to individuals and organisations, including patient charities, involved in the MEGA proposal and on the board of the CMRC, and reflect the central concerns raised in the Opposing MEGA petition and the conclusion that we have no confidence in MEGA.

It is imperative that research funders are aware of the majority view in response to the request by MEGA for support of their proposals and the legitimate concerns behind this majority view. This is, of course, particularly important where those funds are from the public purse and when better value for money can be gleaned by using existing resources.

As Prof Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine, stated on the Phoenix Rising Forum:

“Of course it would be nice to have a big study of lots of things in lots of patients but it needs to be done carefully and it will cost a vast amount of money to do that. I think it likely that the money would be better spent in other ways. We already have a Biobank resource and a method for recruiting cohorts – which could be improved but is a good start. I strongly suspect that several metabolomic and genetic and other projects are already being set up with reasonable sized samples elsewhere in the UK”.

The international scientific and clinical community is on the verge of establishing biomarkers for accurate diagnosis of this complex disease, known for research purposes as ME/CFS, and it would be foolhardy to fund a fishing expedition at this stage. However, we must emphasise that our petition is not primarily concerned with the details of the protocol, but rather with the insurmountable and serious matters of research conduct and integrity.

Patients and professionals alike were misled over the PACE trial from its inception to the present day. Children are among the patients suffering daily from the consequences. We cannot afford as a civilised society to repeat nor perpetuate this mistake.

Thus, we submit this letter and Opposing MEGA petition, along with its comments, as an outright rejection of calls by CMRC/MEGA for mainstream research funding and request that you ensure this letter and content is brought to the attention of all personnel in your organisation with responsibility for research funding applications.

We are willing to provide you with further information upon request. We would strongly recommend that you take note of the comments on the petition, the various updates posted and the Opposing Mega website
https://opposingmega.wordpress.com/

Yours faithfully,

A. Kirby

on behalf of

Organisers and signatories to the Opposing MEGA counter-petition –
https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs

Opposing MEGA rejects this petition by MEGA to mainstream research funders –
https://www.change.org/p/support-this-huge-biomedical-m-e-cfs-study-and-its-application-to-major-uk-research-funders
 



January 2017
 
A Travesty Of Science And A Tragedy For Patients: Quotable Quotes Continued 2006 – 2016

 
This is a long document, so I have just posted the first section. To download and read the whole document, please go to –
 
http://www.margaretwilliams.me/2017/quotable-quotes-continued.pdf
 
A Travesty Of Science And A Tragedy For Patients: Quotable Quotes Continued 2006 – 2016
 
This document is in 4 sections: Professors Wessely, White, Sharpe and the PACE Trial
 
Compiled by Margaret Williams
 
17th December 2016
 
To assist the reader, as this document is quite lengthy, notable sentences have been highlighted in yellow.

 
In his power-point presentation on 29th June 2011 about the PACE Trial for the “Forward ME” meeting at The House of Lords, Professor Malcolm Hooper referred to the ME situation in the UK as: “The 3 Ts – Travesty of Science; Tragedy for Patients and Tantamount to Fraud”.
 
The tragedy for ME patients in the UK existed long before the PACE Trial: it has existed for the last three decades. Can it be attributed to the zealous proselytizing by certain psychiatrists – all of whom are involved with the medical insurance industry and who deem themselves “experts” on ME/CFS - to convert non-believers to their own beliefs about the nature of it?
 
As in “Quotable Quotes Updated” (which provided examples of unhelpful comments about people with ME/CFS from 1988 to 2005 emanating from psychiatrists Professors Simon Wessely, Peter Denton White and Michael Sharpe and can be accessed at www.margaretwilliams.me), this continuation provides more illustrations of their published views on ME/CFS from 2006 to 2016. It is not comprehensive but merely representative.
 
In order to understand the effect on patients with ME of the Wessely School’s beliefs and their total disregard of the mainstream biomedical evidence-base that has been shown to underpin the disorder (evidence which vitiates their beliefs), it is essential to be aware of that evidence-base, particularly of the widespread inflammation and the proven immunological, cardiovascular, endocrine, gastrointestinal and musculoskeletal dysfunction, summaries of which can be accessed at www.margaretwilliams.me
 
One would have expected that these psychiatrists would have kept up-to-date (which doctors are required to do) but their views have remained intransigent (ie. They continue to insist that ME/CFS is a behavioural disorder and that patients who believe they suffer from a physical disease perpetuate their own “perceived” ill-health).
 
Although some of these quotations are from ten years ago, they were published during the planning/execution of the PACE trial, whose interventions of CBT and GET were predicated on these psychiatrists’ beliefs.

To continue reading the document, go to
 
www.margaretwilliams.me/2017/quotable-quotes-continued.pdf
 



January 2017
 
A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”

 
https://qz.com/884658/are-chronic-fatigue-syndrome-ibs-and-crohns-disease-really-all-in-the-mind-a-psychosomatic-disease-diagnosis-is-a-doctors-way-of-saying-i-dont-have-a-clue/
 
Written By Jamison Hill
 
For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”
 
I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind.
 
The latter is the basis for psychosomatic theory, which is the idea that the mind can produce diseases. Diseases commonly thought to be psychosomatic—such as irritable bowel syndrome and Crohn’s disease—can pummel a healthy, thriving member of society without any indication of how. This theory became popular in the US in the early 20th century; Sigmund Freud is the most well-known name associated with it, who maintained that “hysteria” could cause any number of physical illnesses.
 
Similar theoretical concepts like somatoform disorder suggest that the body can only cope with a finite amount of mental factors before physical symptoms, like headaches, begin to show. But there is a substantial difference between an acute problem like a stress-related headache and claiming that a serious chronic illness is psychosomatic. With the exception of chronic migraines, a headache is generally considered to be an acute symptom, not a chronic illness.
 
The theory of psychosomatic illness is flawed. Many serious illnesses are initially tagged as psychosomatic because they are too complex for doctors to offer a singular explanation or because the patients have no physical symptoms. There may be a connection between the body and mind—the brain is, after all, an anatomical feature of the body—but this does not mean that physiological diseases can be manifested through mental factors. For example, a 2007 commentary published in the Journal of the American Medical Association concluded that while stress can be a factor in some diseases, “a causal relationship” could not be found.
 
Dr. Dale Peterson, former president of the Oklahoma Academy of Family Physicians, is even more adamant that physiological disease cannot be caused by mental factors. “Psychological and sociological dynamics may predispose an individual to illness or cause an illness to be much more severe, but other factors must be present to trigger the condition,” he says.
 
The idea that a disease can be generated from the mind not only lacks scientific evidence—it is belittling to those who suffer from physical illnesses. As Dr. Peterson explains, for someone in the medical field to say a physiological illness is psychosomatic is merely “a professional way of saying I don’t have a clue!”
 
I contracted myalgic encephalomyelitis after a bad case of mononucleosis in 2010 (an illness often jokingly referred to as the “kissing bug”). Within the first year, my condition had deteriorated to the point where I could no longer take care of myself; I had become bedridden, and eventually lost my ability to speak, eat, tolerate light, or lift my head off the pillow. Through a daily regimen of oral anti-viral medication and IV treatments, my health eventually started to improve. I can now speak polysyllabic words, chew soft food, and sit up in bed to see the sunlight streaming across my room.
 
But these improvements have had nothing to do with changes in my mental state; I did not will them to happen. Instead, my body was given the proper medicine to improve its physiological impairment.
 
Regardless, many doctors still disregard my ailments as some form of psychosomatic illness. But sometimes technology just isn’t advanced enough in order to reveal the true underlying physical symptoms behind a disease. For example, until the invention of the MRI in the 1970s, multiple sclerosis was believed to be a form of “hysterical paralysis.” Likewise, some forms of autism, particularly in children, were once thought by some psychologists to be due to a lack of maternal nurturing. Similarly, until inflammation could be measured, asthma was also commonly blamed on overbearing mothers. We all now know that these three diseases have true, physiological causes—not mental ones.
 
While these illnesses have largely overcome psychogenic theories, other physiological illnesses still face similar stigmas: Inflammatory conditions like Crohn’s disease, stomach ulcers, and irritable bowel syndrome (IBS) still carry psychosomatic overtones—usually stress-related—even though they have been proven to have physiological origins. Researchers at the University of Edinburgh, for instance, have compiled an overview of studies that link Crohn’s disease to factors such as genetics, immune function, and gut bacteria, not psychogenesis.
 
A lot of this misinformation has spread widely throughout popular culture despite being proven scientifically unsound. For example, a study published in 2011 in the Lancet, a prestigious UK medical journal, used psychosomatic theory to claim that cognitive behavioral therapy (CBT) substantially benefited people with myalgic encephalomyelitis. The study, known as the PACE trial, was eventually debunked and proved to be the product of bad science—but not before it had influenced public-health services to adopt treatment models, many of which actively harmed patients by prescribing exercise to severely ill patients based on psychogenic models.
 
There is hope, however. After all, multiple sclerosis and autism have managed to transcend the stigma of outmoded psychosomatic theory. But until the government and medical establishment realizes that psychosomatic theory has no place in modern medicine, diseases like mine will continue to be stigmatized, trivialized, and dismissed.
 



December 2016
 
Helen Roseveare (1925-2016) A Tribute

 
http://blog.christianfocus.com/index.php/2016/12/07/helen-roseveare-1925-2016-a-tribute/
 
By Catherine Mackenzie, Christian Focus Publications, 7 December 2016
 
Christian Focus Publications would like to extend its sincerest condolences to the family and friends of our dear Helen Roseveare, who passed away this morning. She dedicated her life to serving others even in the deep trials of life. She pioneered vital medical work in the rainforests of what is now the Democratic Republic of Congo and was an internationally respected speaker with WEC ministries. We are thankful at Christian Focus for Helen’s ministry through the books we have been blessed to publish. She spent her life in service for the Lord and today she is with Him, worshipping Him, in heaven.
 
Catherine Mackenzie, Children’s Editor at Christian Focus, shares the impact Helen Roseveare had on her life.
 
This morning a good friend and encourager Helen Roseveare passed away, she had been longing to go home to be with Christ. Now this has happened we who remain look back at her life and rejoice in the work that the Lord gave her and in the witness she gave to his worthiness.
 
It was eleven years ago that I met Helen Roseveare for the first time. She had not long celebrated her eightieth birthday. I’d read her books and knew her story and somehow or other I had been invited to stay with her in Belfast. It was great to actually meet one of my heroines. She was not only encouraging, she was challenging. It was an environment – all be it just for a weekend – where I felt safe to be honest with her and Pat, her friend, about the challenges and struggles of my own little life. Even though she had been through so much herself (if you don’t know what I mean then read her books) my problems didn’t feel too insignificant to share. And the words she gave me before I left on the flight from Belfast to Inverness were straight forward – just telling me to keep on going. And I’m thankful to her and to God that I have through His strength.
 
After that she came over to my congregation to do a conference. It was there that she gave, as part of her message, four little words that I believe were the backbone to her life and reinforced, for me, the message of her books, the message she gave me before I left Belfast and the message her Lord and Saviour, Jesus Christ, gives all believers.
 
“Jesus is Worth it”.
 
Towards the end of that conference I had the pleasure of taking her and Pat for a tour of the Black Isle – a Scottish peninsula near Inverness. What took place at lunch that day is one of several distinct ‘Helen and Pat’ memories that will stay with me for the rest of my life. If you’ve not met either of them – let me describe these two women of God… in two words (believe me I could pick another 100 words to describe them and I wouldn’t do them justice.)
 
Smart. They both graduated in medicine at a time when to be a female graduate in any discipline like this was rare.
 
Cosmopolitan. Both travelled extensively – before the easy days of online booking and satnav.
 
But if you had been the couple sitting beside us in the restaurant that day you wouldn’t have looked twice. You would have presumed ‘they’re just two little old ladies’. But that’s one point where the church and the world differs – God’s kingdom never puts the word ‘just’ before any category of believer – particularly little old ladies.
 
Our neighbouring diners were given a visual and audible lesson in this when, after lunch, Pat and Helen’s conversation went as follows:
 
“I don’t think we’ll ever be able to get back to Afghanistan but it is a beautiful country, and the Lord is at work there…” – or words to that effect.
 
As my chin dropped I could see the looks on the people at the table beside us as they turned and stared. Two women they had just spent the last hour ignoring were talking about a trip they had made to what was now one of the most notoriously violent countries in the world.
 
Helen and Pat started reminiscing about people who had lived and worked in that region and about the brief time they had spent in a nation that was now in the thick of a conflict that threw up words like Taliban and Terrorist.
 
I drove them back to my parent’s house and before too long they were on their way back to Belfast discussing, no doubt, their plans for the development of the girl’s clubs they were involved in and the future fundraising for their local church.
 
So don’t make assumptions about little old ladies… especially when you hear the word church and missionary in the same sentence … they may very well have been where we will never go, have done what we wouldn’t dream of, and have given up what we just aren’t willing to.
 
Helen Roseveare was a little old lady, during the time I knew her, but really age didn’t come into it. She was a woman after God’s own heart and Jesus was the one that her heart longed after. She’s with him this morning – still part of the church as she worships more fully in heaven. We who remain, continue as she did once to long for home.
 



December 2016
 
Parliamentary Questions asked by MP Kelvin Hopkins

 
https://opposingmega.wordpress.com/2016/11/27/parliamentary-questions-asked-by-mp-kelvin-hopkins/
 
Kelvin Hopkins, Member of Parliament for Luton North, has addressed some written parliamentary questions about ME/CFS research and treatment recommendations to the Department of Health and Department for Business, Energy and Industrial Strategy.
 
He asked if the Secretary of State for Business, Energy and Industrial Strategy will request that the Medical Research Council conducts an inquiry into the management of the PACE trial to ascertain whether any fraudulent activity has occurred; and if he will prevent the PACE trial researchers from being given further public research funding until an inquiry into possible fraudulent activity into the PACE trial has been conducted. The Department for Business, Energy and Industrial Strategy indicated on 25th November that it will not be possible to answer these questions within the usual time period and that answers are being prepared and will be provided as soon as they are available.
 
Two further questions by Kelvin Hopkins, which are currently awaiting answers, ask the Secretary of State for Business, Energy and Industrial Strategy, if he will take steps to identify those responsible for the Medical Research Council’s policies towards ME research over the last decade; and if he will seek those people’s removal from positions of influence over future of ME research; and if he will review the policy of the Medical Research Council (MRC) in so far as it relates to addressing the dissatisfaction of ME patients with MRC’s approach in this area.
 
Kelvin Hopkins also asked questions of the Secretary of State for Health regarding review of the NICE guideline and treatment recommendations.  The answer was –

The National Institute for Health and Care Excellence (NICE) is an independent body and is responsible for ensuring that its guidance remains up to date. NICE has advised that it has brought forward the next review date for its guidance on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis from 2019 to 2017 to coincide with the expected publication of relevant new evidence.
 
NICE’s aim is to make a decision on whether an update of the guideline is required by the end of 2017.

You can find the parliamentary questions and answers here –
http://www.parliament.uk/business/publications/written-questions-answers-statements/written-questions-answers/?page=1&max=20&questiontype=AllQuestions&house=commons%2clords&member=2&keywords=Chronic%2cFatigue%2cSyndrome
 
Short link – http://bit.ly/2gyJ0il
 
The Opposing MEGA petition organisers have not been in contact with Kelvin Hopkins, but these parliamentary questions are relevant to our rejection of the call by MEGA for ‘mainstream research funding’ which stands to amount to at least £9m.
 
MEGA (M.E./CFS Epidemiology and Genomics Alliance) is a project of the CFS/ME Research Collaborative (CMRC).  The CMRC formed in 2013 following on from the last CFS/ME ‘Expert Group’ of the Medical Research Council (MRC).
 
The MRC co-funded the £5m+ PACE trial, designed to provide evidence that the psycho-behavioural and graded exercise therapies recommended by the National Institute for Health and Care Excellence (NICE) are effective and cost effective treatments for ME/CFS, along with the Department for Work and Pensions and other co-funders.
 
The PACE trial was led by Professor Peter White of Queen Mary University London (QMUL). The university spent some £200k of public funds appealing a decision by the Information Commissioners Office for release of raw data from the trial for analysis by independent researchers.  A tribunal upheld the ICO decision, published August 2016.
 
Professor Esther Crawley of the University of Bristol relies on the PACE trial as research evidence to support funding applications for studies into paediatric ME/CFS.  She stated, during the extensive media coverage of her new FITNET trial at the beginning of November 2016, that PACE was a “great, great study”, and further demonstrated a lack of comprehension by misrepresenting the results of the recent reanalyses of the PACE trial data.
 
Esther Crawley is Vice-Chair of the CMRC and is listed by MEGA as an applicant in their petition to mainstream research funders.  MEGA announced on 3rd October 2016 that Peter White had retired from the group and will have an advisory role.
 
Confusingly then, Chair of the CMRC Professor Stephen Holgate, has put in writing that MEGA and the CMRC have no connection with the PACE trial or Peter White now that he has retired.
 
It is refreshing to read that Kelvin Hopkins has asked such pertinent parliamentary questions, as the answers that various people are receiving in writing from members of the CMRC Board about MEGA sound as though they are coming from establishment politicians rather than scientists or medical doctors, and only serve to make us ever more certain that we are right to have no confidence in MEGA.
 
You can cast your vote against giving more millions of pounds of ‘mainstream funds’ to anyone connected to highly suspect research activities by signing our petition Opposing MEGA – https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs
 


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© Hazel Stapleton 2000 - 2017
E-mail: hazel <at> oneagleswings.me.uk