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!
Please buy this DVD! It has been made to educate people about the reality of severe ME. It is not a Christian film, and I would not advise showing it to children or to those newly diagnosed with the illness, but I would certainly recommend it. For those who believe ME to be simply “chronic fatigue”, the contents will come as something of a shock.
The film has been made by Natalie Boulton and Josh Biggs – the mother and brother of a severe ME sufferer. Josh is a young professional freelance editor and cameraman. Natalie was an artist/teacher and is a full time carer for her daughter who has been ill for over 20 years. This is the first time we have worked together on a film and we are both first time director/producers. The making of the film has been entirely financed by our family and we are grateful to unpaid help we have received. The music was written, recoreded and kindly donated to the film by Emmy nominated composer David Poore. Full credits are here
People have asked us if we made the film for a particular charity, as we did with the book ‘Lost Voices from a Hidden Illness’, but we did not. It is an independent project which we felt compelled to make as a family, to try to help make a difference to the lives of so many wonderful young, and not so young, severe ME sufferers. We need you to help by using the film to inform others about this situation. Please buy copies of the film to give to others, particularly to those professionals who could help change the lives of so many people living in fear and isolation. We are not in any way making a profit from this project, we just need others to help too please.
Why did you make the film?
‘Voices from the Shadows’ was born of utter desperation. Having struggled for nearly 20 years to care for my daughter, I found that we were caught in a trap.
Like most patients and their families I believed the medical profession had this disease in their sights and was working at a cure. With an awful shock, after attending Invest in ME and MERUK conferences, I realised that was not the case. NOTHING – absolutely NO biomedical research was being funded by the Medical Research Council in the UK and international biomedical research was just being totally ignored. The illness, which had been taken seriously, identified and studied for decades, had just disappeared off the radar. Instead the name had been changed and research funds were being allocated to psychiatric/behavioural management, using up millions of pounds that could have been used to more fully identify the organic causes and develop more effective treatments.
The illness that trapped my daughter and her friends had been ‘disappeared’!
This was being supported by government policy and the media had been doing an excellent job of trivializing the illness and denigrating patients. Nowhere in the public domain was there any sign of the terrible severity of the illness I saw driving many intelligent, creative, positive and courageous young people, into lives of devastating dependency, isolation, pain and steadily deteriorating health. Not only that, but the abuse suffered by some patients who were being harmed by professionals was going totally unrecorded and unnoticed. Patients were, and are, dying invisibly…..
Between 2007-9 I worked on a book for the charity Invest in ME – ‘Lost Voices from a Hidden Illness’ – which started to give patients a ‘voice’. This opportunity was particularly appreciated by young people who had been severely ill for 15-20 years or more; since childhood. I was helped by my son Josh who taught me the computer techniques I needed to carry out the project.
We realized that one of the problems is that severely ill patients with ME become completely isolated and invisible to the world at large. Few people see them, they are too ill to take part in most research projects and so very few people are aware of the severity and nature of the illness. When ‘Lost Voices’ was finished we realized that more needed be done. Josh offered to help with making what was intended to be a short film using his professional expertise and his close involvement with the subject. We started filming, not really knowing what direction the film would take, but our work on ‘Lost Voices’ did not prepare us for the shocking revelations that came to light when we spoke to patients, carers and doctors – of the abuse of children and patients. The project grew and evolved in a direction we hadn’t foreseen. As with ‘Lost Voices’ we worked very closely with the families in the film, many of whom we had known for years, to make sure they were accurately represented and in a collaborative effort we were given access to personal documentation which had not previously been publicly available.
This is a new article by Margaret Williams and I recommend it to you. I am not going to reproduce all of it here, but the following is a quote that is found towards the end of the article -
Commenting on a response to her article “Illness as Deviance, Work as Glittering Salvation and the ‘Psyching-up’ of the Medical Model: Strategies for Getting the Sick ‘Back to Work’ ” (http://www.democraticgreensocialist.org/wordpress/?page_id=1716), Gill Thorburn says: “I was appalled to discover what they have been doing to the ME community for so many years. Its nothing short of legitimised abuse. The one discouraging thing I’ve experienced in all my research so far has been discovering for how many years how much authentic evidence has been simply disregarded by those in power in favour of this spurious psychological approach. Some of the accounts on the net are simply heartbreaking, and it beggars belief that these people should have been allowed to continue with their ‘methods’ and ‘theories’. As someone pointed out recently, they ‘intervene’ in peoples’ lives with impunity, disregarding their negative effects, for which they are never held to account”.
January 2012
Research: loss of capacity to recover from acidosis after repeated exercise, European Journal of Clinical Investigation, February 2012 - http://www.meassociation.org.uk/?p=9972
This study was funded by the ME Association’s Ramsay Research Fund
Loss of capacity to recover from acidosis on repeat exercise in chronic fatigue syndrome: a case-control study.
Jones DE, Hollingsworth KG, Jakovljevic DG, Fattakhova G, Pairman J, Blamire AM, Trenell MI, Newton JL.
Institute of Cellular Medicine Newcastle Magnetic Resonance Centre Institute for Ageing and Health The UK NIHR Biomedical Research Centre in Ageing and Age Related Diseases Newcastle Centre for Brain Ageing and Vitality, Newcastle University, Newcastle, UK.
Abstract
BACKGROUND Chronic fatigue syndrome (CFS) patients frequently describe difficulties with repeat exercise. Here, we explore muscle bioenergetic function in response to three bouts of exercise.
METHODS A total of 18 CFS (CDC 1994) patients and 12 sedentary controls underwent assessment of maximal voluntary contraction (MVC), repeat exercise with magnetic resonance spectroscopy and cardio-respiratory fitness test to determine anaerobic threshold.
RESULTS Chronic fatigue syndrome patients undertaking MVC fell into two distinct groups: 8 (45%) showed normal PCr depletion in response to exercise at 35% of MVC (PCr depletion >33%; lower 95% CI for controls); 10 CFS patients had low PCr depletion (generating abnormally low MVC values). The CFS whole group exhibited significantly reduced anaerobic threshold, heart rate, VO(2), VO(2) peak and peak work compared to controls. Resting muscle pH was similar in controls and both CFS patient groups. However, the CFS group achieving normal PCr depletion values showed increased intramuscular acidosis compared to controls after similar work after each of the three exercise periods with no apparent reduction in acidosis with repeat exercise of the type reported in normal subjects. This CFS group also exhibited significant prolongation (almost 4-fold) of the time taken for pH to recover to baseline.
CONCLUSION When exercising to comparable levels to normal controls, CFS patients exhibit profound abnormality in bioenergetic function and response to it. Although exercise intervention is the logical treatment for patients showing acidosis, any trial must exclude subjects who do not initiate exercise as they will not benefit. This potentially explains previous mixed results in CFS exercise trials.
The Medical Research Council (MRC) has awarded more than £1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).
The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.
CFS/ME is a complex and debilitating condition that affects around 250,000 people in the UK , including children. Symptoms include profound physical and mental fatigue, muscle and joint pain, disturbed sleep patterns and concentration and memory problems. The combination and severity of symptoms varies from patient to patient, making it a difficult condition to diagnose and treat.
Professor Stephen Holgate, Chair of the MRC’s Population and Systems Medicine Board, said:
“There is a pressing need to understand the causes of CFS/ME, and the MRC is delighted to announce substantial funding to address this. The quality and breadth of the scientific proposals we received in response to our funding call exceeded expectations and led to us funding more studies than we had originally anticipated.
“We’re especially pleased that the five new projects address many of the priority areas identified by our CFS/ME Expert Group in collaboration with charities and leading researchers in the field. We hope the awards will drive forward the research agenda in this area, paving the way for new diagnostic tools and treatments.”
Dr Charles Shepherd, member of the MRC CFS/ME Expert Group and trustee of the ME Association, which has agreed to provide £30,000 to co-fund one of the five projects, said:
“The ME Association is very pleased to learn that the MRC has followed up the research priorities identified by the Expert Group and agreed to fund five high-quality studies that aim to identify important biomedical abnormalities that may be involved in the underlying cause of CFS/ME.
“The patient community will particularly welcome research involving biomarkers/biological fingerprints, which could lead to a diagnostic test, and immune system abnormalities, which could lead to more effective forms of treatment.
“The fact that one of the studies is being co-funded by the charity sector marks a much needed step forward in co-operation between patients and researchers in this field. This initiative could be utilised to help fund additional research involving the priorities not yet covered by this announcement.”
The MRC has striven to stimulate high quality CFS/ME research for a number of years. Most recently the specially constituted MRC CFS/ME Expert Group, which involves leading researchers in the field and related areas, along with representatives from two CFS/ME charities, identified six priority areas where important research questions remained unanswered.
In February 2011, the MRC issued a £1.5m call for proposals in these areas, aimed at encouraging fresh partnerships between established CFS/ME researchers and those with strong scientific credentials, but new to this field. The key areas were:
In response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects. The awards range in total value from £120,000 to £450,000 and the successful applicants were:
· Dr Wan Ng, Newcastle University
· Professor Julia Newton, Newcastle University
· Professor Anne McArdle, University of Liverpool
· Professor David Nutt, Imperial College London
· Dr Carmine Pariante, King’s College London
While the applications addressed most of the priority areas highlighted in the call, the MRC will announce shortly how it plans to stimulate research activity in those areas which were not covered.
There is a light-hearted theme to this winter page but it is here also to ask for a thought to be spared whenever giving presents – see Ways to Help This Christmas.
We look forward to a New Year full of hope with good science and biomedical research providing the breakthroughs in understanding and treating myalgic encephalomyelitis.
There is still no consensus in either direction for the existence or non-existence of XMRV associated with CFS cases. Studies out of Europe (Belgium and Germany) and the US (Cornell) as well as elsewhere which are separate from WPI, FDA and NCI are demonstrating evidence that cannot be due to a mouse contaminant for XMRV association with CFS. The strongest supportive study to date was reported by Dr. David Strayer out of Hemispherex Inc, (Philadephia, PA) at IACFS/ME in Ottawa and showed that 7/8 CFS cases and 2/17 controls were positive for XMRV using Next Generation Sequencing (NGS) technology available at Roche Labs in Germany. NGS is not susceptible to mouse contamination and demonstrates that XMRV is in fact integrated into human DNA which means it is a human virus. The Science (Lombardi et al, 2009) study still stands as the best evidence that this virus is transmissible from cell to cell and the studies out of WPI and Belgium demonstrate an immune response (antibodies) to XMRV and a cytokine profile (WPI) that suggests it is pathologic.
I expect that Next Generation Sequencing or NGS, which does not have the flaws of PCR technology in evaluating a poorly understood human virus(es), will be the best way forward to a consensus as to the question of association of CFS with XMRV/HGRV. This preliminary report out of Germany using NGS as well as human immune response data supports the association of XMRV with CFS, despite the flaws exposed in the current primary PCR technology used to define this scientific debate which appears very messy and excessively bio-political to date.
November 2011
The Countess of Mar speaks out again for ME sufferers
The Countess of Mar made another intervention during the House of Lords debate (16 November 2011) on the Government’s Health and Social Care Bill. The debate on the Committee Stage was in its sixth day.
She said:
As the Minister knows, I am concerned about people with CFS/ME. They are the most neglected, denigrated and discriminated-against group in the country and there are some 60,000 of them who are severely ill, which means that they are homebound and bed-bound.
They have multi-system symptoms, which are far too often neglected. They have co-morbidities - one person that I know of, who has had ME since she was 15 and is now 30, has severe gynaecological problems but because she has ME they are not going look at those. Also, she gets no social care.
It is very important that these services are thoroughly integrated and that people understand that because you have ME it does not mean to say that all you need is a little bit of CBT and GET and you can get up and go. We have got to provide for people who are severely ill.
November 2011
Invest in ME Conference 2011 DVDs
After a rather long delay, the DVDs of this years’ Invest in ME conference are now available. One of the talks is given by Øystein Fluge and Olav Mella, the two men who led the research at the Haukeland University Hospital in Bergen, Norway, which has recently been published – they give a lot more details of the research in their talk than has been given in some of the press releases and I would certainly recommend watching it.
The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen (click here).
After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage since then the Norwegian Directorate of Health gave a short statement on TV2 channel, see TV2 Nettavisen (click here).
A statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME.
Such a public apology from a governmental health agency has never occurred before.
Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health made the following statement
"Jeg tror at vi, i for liten grad, har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte. Jeg tror at det er riktig å si at vi ikke har utviklet en god nok helsetjeneste for disse, og det beklager jeg."
"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."
Patients have thanked Norwegian channel TV2 for their massive media campaign - click here.
The TV2 channel has set up a web page containing all media coverage they have had – which includes easy access to writings and video clips - click here.
The Norwegian research project referred to has, at long last, got a mention on the BBC website -
Researchers in Norway believe Chronic Fatigue Syndrome (CFS), also known as ME, may be caused by a wayward immune system attacking the body.
The illness, the cause of which is uncertain and has no known cure, has attracted significant controversy.
A small study, reported in PLoS One, showed a cancer drug, which inhibited the immune system, relieved symptoms in some patients.
The ME Association said the findings were "very encouraging news".
Doctors in Norway stumbled across their first clue in 2004 when treating a patient with both Hodgkin's lymphoma, a cancer of the white blood cells, and CFS.
When she received cancer treatment, her fatigue symptoms improved for five months.
'Dramatic'
The latest study, carried out at the Haukeland University Hospital in Bergen, built on the previous discovery by testing 30 patients with CFS.
Half were given two doses of Rituximab, a cancer drug which eliminates a type of white blood cell, while the other half were given a fake treatment.
In those patients receiving the drug, 67% reported an improvement in a score of their fatigue levels. Just 13% showed any improvement in the sham group.
Øystein Fluge, an oncology consultant at the hospital, told the BBC: "There was a varied response: none, moderate, dramatic relief of all symptoms.
"Two had no recurrence [of their symptoms], their life was turned completely around very dramatically."
Their theory is that a type of white blood cell, B lymphocytes, are producing an antibody which attacks the body.
The drug wipes out the lymphocytes which in some cases may "reset the immune system", however, in other patients the fatigue symptoms would return when more B lymphocytes were made.
Caution
Mr Fluge said: "I think the fact that patients responded to treatment, improved cognitive function, fatigue and pain makes us believe we're touching one of the central mechanisms.
"But we're scratching at the surface, I would not characterise this as a major breakthrough."
The researchers are now investigating the effect of giving more doses over a longer period of time.
If their hunch is right it will throw up more questions, such as what is the immune system actually attacking and whether or not an actual test for CFS/ME be developed.
Dr Charles Shepherd, the UK ME Association's medical adviser, said: "The results of this clinical trial are very encouraging news for people with ME.
"Firstly, they help to confirm that there is a significant abnormality in immune system function in this disease.
"Secondly, they indicate that altering the immune system response in ME could be an effective form of treatment for at least a subset of patients.
"We now need further clinical trials of such anti-cancer agents to see if other research groups can replicate these findings."
An anti-cancer drug could hold the key to treating chronic fatigue syndrome (CFS). Symptoms of the disease eased in 10 of 15 patients given rituximab, an anti-lymphoma drug.
Rituximab works by destroying white blood cells that make antibodies, called B cells. The results of the trial therefore strongly suggest that these white blood cells might be involved in causing CFS – a disorder also known as "yuppie flu" or myalgic encephalomyelitis (ME), and one that has so far defied explanation.
The research was jointly led by Øystein Fluge and Olav Mella at the Haukeland University Hospital in Bergen, Norway. Their team discovered by accident that rituximab might work against CFS after seeing symptoms ease in a patient who had both lymphoma and CFS.
"We think it affects all symptoms [of CFS], so it must touch the central pathological mechanism causing the disease," Fluge says.
Two of the 15 people in the trial appear to have completely recovered since they first received the drug three years ago. "Those two are both back at work," Mella says.
Dramatic results
"It's the most encouraging drug result so far in the history of this disease," according to Charles Shepherd, medical adviser to the UK ME Association. "Although it's a small trial, it's produced dramatic results."
The researchers say that following two doses of the drug being given in the first two weeks of the trial, there was a lag of three to eight months before symptoms began to subside. They say this delayed response tallies with the idea that CFS is caused by autoantibodies – antibodies, made by B cells, that mistakenly attack the body's own tissues.
Rituximab is itself an antibody designed to target and destroy B cells. Mella says that all the B cells are gone within two weeks or so of the treatment, but autoantibodies typically survive in the body for another two or three months. "Washing out these antibodies is the most probable explanation for the time lag in benefits," he says.
The researchers found no trace of XMRV, a mouse leukaemia virus once implicated as a possible cause of CFS. The virus has now been virtually eliminated as a possible cause.
Blind alley
"We looked as hard as we could for it, by several methods, but the search was negative," Fluge says. "We think suggestions it was XMRV [causing CFS] have turned out to be a blind alley, caused by contamination of samples."
"XMRV is dead, a sad and disappointing story that raised a lot of false hopes for patients," says Shepherd. He adds that it is important not to raise hopes again by over-hyping the rituximab results. "We're still a long way from making this drug more widely available, but if someone wants to mount a UK trial, we'd look at that," he said.
Encouraged by the extended remission of two of the people in the trial, the Norwegian researchers are now checking whether further, periodic doses of rituximab could permanently keep the symptoms of CFS at bay. Mella says it is possible that the five who saw no benefits from the trial might have done so eventually if they had received further doses.
The European ME Alliance welcomes the research by Fluge, Mella et al published on 19th October 2011 in Plos One.
This research clearly shows the physical basis of ME.
It also shows that patients had no difficulty in adjusting to normal life - something which makes redundant the previous attributions to psychological problems in this patient group.
Now we encourage public funding bodies in different countries to follow the example of this double blind placebo controlled clinical trial to start seriously investing in biomedical research into ME.
It is time to take this disease seriously and help patients regain their health and normal functioning.
New International Consensus Criteria published in the Journal of Internal Medicine
In July of this year the Journal of Internal Medicine published an online draft of the new Myalgic Encephalomyelitis: International Consensus Criteria which has been written by a panel of 26 experts from 13 different countries. The full, proof-read document is now properly available in both the printed and online versions of the Journal.
A full HTML version can be found here, and to see the PDF version click here
I thought that the following comment in the abstract was particularly helpful to those of us with ME as opposed to CFS -
"The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3)."
“Voices from the Shadows is a compassionate and moving exposé that bears witness to the tragic consequences of psychiatric prejudice and medical ignorance concerning one of the most prevalent illnesses of the 21st century.
“The film foregrounds the riveting stories of several British families confronting what must be everyone's worst nightmare: a loved one suffering a life-altering illness that leaves him or her bedridden and in constant pain, with no apparent cure.
“But what if the medical establishment made the situation worse instead of better?
“Such are the heartbreaking circumstances of the under-reported controversy surrounding ME (myalgic encephalomyelitis), aka chronic fatigue syndrome.
“Firsthand accounts from patients, caretakers, and medical experts paint a shockingly confused state of affairs—and underscore the urgency and frustration around this issue.
“A call to action for anyone who cares about the health and wellbeing of their community, this powerful film is equally a tribute to those whose voices must be heard.”
- Atissa Manshouri
“Voices from the Shadows is the most important and significant film on pediatric ME that has ever been produced”.
– Professor Leonard Jason
Contributors to the film include - Professor Leonard Jason, Dr Nigel Speight and Professor Malcolm Hooper.
Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.
Please help us fund biomedical research into ME.
The current figure raised for a biomedical research and examination facility will be updated weekly.
In what now appears to be some kind of organised media campaign, Professor Simon Wessely has in the last month or so been mentioned and featured in many of the major newspapers and on the radio in connection with alleged threats made against him by “ME militants” – all of which has come as a shock and to the dismay of seriously ill ME sufferers as well as to their families and friends.
How is it that Professor Wessely has managed to get his story covered by so much of the media? Could it be anything to do with him being a member of the Scientific Advisory Panel at the Science Media Centre? The Centre has been described as “a body that controls the scientific / medical information that the UK media may report” (for further details click here). Could this also have anything to do with why biomedical conferences and research findings into ME rarely get a serious mention in the media?
First of all, for some background information, please look up the following on the ME Action UK website – they are not recent documents but are very helpful -
Not forgetting the trailer for Voices From The Shadows, a documentary about ME due to be released this Autumn - http://vimeo.com/24683179
I am not going to mention all of the articles and interviews from the last few weeks, or all of the responses to them, but I would recommend these two responses to an interview with Professor Wessely that was broadcast on Radio 4 on 29 July 2011 -
This letter was submitted by Professor Hooper to the Observer, in response to the article by Robin McKie "Chronic fatigue syndrome researchers face death threats from militants", published on Sunday the 21st of August 2011:
Professor Hooper was contacted out of the blue by the reader's editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie's article.
The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.
He received an acknowledgement from the reader's editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.
From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland, SUNDERLAND SR2 3SD
Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)
25 August 2011
Dear Sir
No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.
It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.
ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.
The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.
No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.
For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.
These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.
The true ME story has yet to be told.
Malcolm Hooper
In addition to the above letter, Professor Hooper’s longer and more detailed response to the article in The Observer can be found by clicking here.
Finally, could it be merely a coincidence that all of this media coverage has come at a time when a panel of 26 experts and clinicians from 13 countries has published a new International Consensus Criteria for ME in the Journal of Internal Medicine? The new Criteria are summarised here. I don’t recall this being widely mentioned in the UK media ... Nor can I remember widespread mention of the 6th Invest in ME International ME/CFS Conference held in May of this year ...
The 25% ME Group is the only UK charity representing just severely affected ME sufferers, we would like to request a right of reply to the article by Stefanie Marsh in The Times, 6 August 2011.
Stefanie Marsh’s article about Professor Simon Wessely "the most hated doctor in Britain” begins by naming him Britain’s foremost authority on ME. This may be his opinion, but it is worth reminding readers that medics worldwide who treat and study ME disagree with Professor Wessely that the illness is psychiatric. Substantial and significant published research shows ME to be organic, not psychiatric and it is considered to be so by doctors in all fields other than psychiatry.
The renowned expert Dr Byron Hyde said "The belief that [ME] CFS is a psychological illness is the error of our time."
In 2004 the Countess of Mar claimed in the House of Lords, "Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder”. She went on to call him "savagely cruel to the ME community”. This is a view of Simon Wessely that it may have been useful to explore in an article that seems astonished that some ME patients are angry with him.
In Stefanie's article Wessely states "a pessimistic illness perception can become a self-fulfilling prophecy of non-recovery". "Patients tend to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover."
A very quick internet search would have found The Case Definition for ME compiled by the world's leading authorities on ME which makes these "beliefs" seem more like reality. It states that it is "a severe systemic acquired illness" that "follows an acute infection" and that previously "patients had been healthy, living full and active lifestyles".
It quotes studies that show less than 10% of patients return to pre-illness levels of health and claims that loss of quality of life is more than for "many other chronic illnesses”. The article presented Wessely as a victim of abuse from ME sufferers. However the real victims of this story could be seen as the thousands of ME patients whose lives are drastically affected by dangerous and unproven assumptions that nothing is physically wrong with them.
The recent deaths of Sophia Mirza and Lynn Gilderdale show where this can lead.
Patients anger at Wessely’s loud and damaging mis-diagnosis, like the anger of MS patients when psychiatry labelled it hysterical paralysis, is not based on prejudice against mental illness but on the fact that they will not receive treatment or a cure if Wessely's therapy is all that is offered.
As the Countess of Mar pointed out, the end result of Wessely’s proclamations is "that patients receive no investigations, support, treatment, benefits or care”.
No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with "the scientist" interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.
This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC's Tom Fielden: "People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.
"That really attests to the strength of feeling here – I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological."
No, Dr Wessely, I suspect that that is not what ME sufferers feel – not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed – and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.
They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.
Dr Wessely accuses his hostile critics of "trying to make me into a leper". Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee's Professor Jill Belch said: "It's important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."
They obviously didn't tell Dr Wessely. Anyone whose life has been shattered by ME or CFS – they can be separated – would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.
I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story – the tens of thousands of people in the UK whose lives have been almost shut down by ME.
I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.
Malcolm Hooper, Emeritus Professor of Medicinal Chemistry
University of Sunderland
The editor of the BMJ refers to the "unproductive standoff" in relation to the long-running disagreement about the nature of ME between the evidence-based biomedical school dating back to at least 1956 (with the WHO classifying ME as a neurological disorder in 1969) versus the ideology of the "psychosocial" school, whose vested interests in maintaining their idiosyncratic categorisation of ME as a mental disorder are a matter of public record 1.
That standoff includes the psychosocial school directing in 1992 that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms 2; in 1994 ME was described by them as merely "a belief" 3; in 1996 they recommended that no investigations should be performed to confirm the diagnosis 4; in 1997 they referred to ME as a "pseudo-disease diagnosis" 5, and in 1999 they said about ME patients: "Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service" 6.
In his letter to the BMJ 7 Peter White et al dismiss key symptomatology of ME including ataxia, palpitations with cardiac arrhythmias and loss of thermostatic stability as being of dubious validity, yet those symptoms are specifically required for a diagnosis of ME as stipulated by 26 international experts from 13 countries who between them have 400 years experience of diagnosing over 50,000 patients 8.
These experts base their latest criteria on biomedical research and clinical experience of widespread inflammation and multisystemic neuropathology found in ME.
Although claiming to do so, Peter White et al do not study ME; they use their own Oxford criteria that select people with psychiatric disorders in which chronic fatigue is a feature 9.
White says their own criteria are easier to use and insists that they do not exclude those with ME simply because he believes ME to be a mental disorder.
Furthermore, in his letter to the BMJ Peter White complains that the criteria which define people with classic ME are too burdensome for doctors to use.
When did the careful assessment of sick people stop being part of the practice of medicine, especially when the disorder in question is known to be a complex multi-system disorder?
2. Medical Research Council Highlights of the CIBA Foundation Symposium on CFS, 12-14th May 1992, reference S 1528/1 (section entitled "The Treatment Process"), now held in the MRC secret files on ME at the National Archive, Kew, and closed not for the customary 30 years but for the unusually lengthy period of 73 years
3. "Microbes, Mental Illness, The Media and ME - The Construction of Disease". Simon Wessely; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, 12th May 1994 (transcript and Wessely's own working notes)
4. Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners; Royal Society of Medicine (CR54), October 1996
5. "Chronic Fatigue Syndrome and Occupational Health"; A Mountstephen & M Sharpe; Occupational Medicine 1997:47:4:217-227
6. "ME. What do we know - real physical illness or all in the mind?" Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde (transcript)
7. BMJ 2011:343:d4589
8. Journal of Internal Medicine: Accepted Article: doi:10.1111/j.1365- 2796.2011.02428.x
9. JRSM 1991:84:118-121
Competing interests: I am a long term advocate for people with ME and have published and lectured extensively on their plight and the injustices they and their carers have suffered as a conseqence of the deeply flawed ideological views of some psychiatrists and the Government agencies that have persistently denied or ignored the massive volume of peer-reviewed, published biomedical evidence.
Bruce M Carruthers MD, CM, FRCP(C) (coeditor), Marjorie I van de Sande BEd, GradDip Ed (coeditor), Kenny L De Meirleir MD, PhD, Nancy G Klimas MD, Gordon Broderick PhD, Terry Mitchell MA, MD, FRCPath, Don Staines MBBS, MPH, FAFPHM, FAFOEM, AC Peter Powles MRACP, FRACP, FRCP(C), ABSM, Nigel Speight MA, MB, BChir, FRCP, FRCPCH, DCH, Rosamund Vallings MNZM, MB, BS, MRCS, LRCP, Lucinda Bateman MS, MD, Barbara Baumgarten-Austrheim MD, David S Bell MD, FAAP, Nicoletta Carlo-Stella MD, PhD, John Chia MD, Austin Darragh MA, MD, FFSEM. (RCPI, RCSI), FRSHFI Biol I (Hon), Daehyun Jo MD, PhD, Don Lewis MD, Alan R Light PhD, Sonya Marshall-Gradisbik PhD, Ismael Mena MD, Judy A Mikovits PhD, Kunihisa Miwa MD, PhD, Modra Murovska MD, PhD, Martin L Pall PhD, Staci Stevens MA
DOI: 10.1111/j.1365-2796.2011.02428.
Abstract
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.
The scope of this paper is limited to criteria of ME and their application. Accordingly, the criteria reflect the complex symptomatology. Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other health care providers, improve consistency of diagnoses in adult and paediatric patients internationally, and facilitate clearer identification of patients for research studies.
The published paper of the PACE trial study into ME is a “Travesty of Science and a Tragedy for people with ME”
In light of the knowledge that the study has now been exposed as seriously flawed - in that it did not actually study people with ME - we the undersigned demand that the authors withdraw the paper with immediate effect.
In an unprecedented move the PACE trial was part funded by the Department of Work and Pensions. With final costs now reported to be between £4 and £5 million and a time scale of 8 years to complete it cannot be said to be a “value for money” exercise. The survey outcome has influenced the guidelines for ME produced by NICE (National Institute for Clinical Excellence), the ME services determined by BACME (British Association for CFS ME) and benefit support by the DWP (Department of Work and Pensions).
This petition will be presented to the Editor of the Lancet, the DWP, the MRC, the APPG for ME and as many MPs that we can identify who have an interest in ME.
An APPG for ME AGM is to be held on 22nd June 2011.
IiME were recently invited to be part of the All Party Parliamentary Group for ME. Unfortunately, due to some personal issues, IiME trustees were not able to participate in person at this meeting.
Instead we have sent the following to the chair of the APPG, Mrs Annette Brooke MP.
APPG for ME – Meeting 22nd June 2011
As the meeting relates to children’s issues we have prepared a few points we would like to make based on our experiences in communication with parents of children and young adults.
The common theme of current treatment seems to be an emphasis on rehabilitation with strict activity management regimes
Children are not listened to - Parents are not listened to
We have an example of a teenager trying to take their own life in hospital after being bullied into activities by nurses and doctors, left in the corridor in the wheelchair; with nurses being told not to help them and parents too afraid to complain.
Another example of a young adult, severely ill, who deteriorated drastically as the hospital team gave them antidepressants and tried to rehabilitate. The family fought hard to try to educate doctors and nurses. A neurologist would not contact another neurologist knowledgeable about ME because he did not believe in ME. Fortunately the health services realised in the end that the family should be listened to and instead of rehabilitation palliative care was put in place. Invest in ME invited the palliative care doctor to the 6th International ME conference and we were told by a family member of this young adult that she was very impressed by the science being presented and previously unaware of all of it. She was also able to make contact with an experienced ME doctor who was at the conference and they have offered to help her in the care of this severely ill patient.
Where do the doctors who are not experienced in ME go to ask for advice in the UK when they encounter severely ill children with ME? Judging by these examples and others which we have come across it is clear that healthcare staff are generally not being given the correct advice or training.
We want to also make it clear that Invest in ME strongly opposes the so called SMILE study which is investigating the effectiveness of the Lightning Process in the treatment of children diagnosed with ME.
The Lightning Process is a Trademark NLP business which should have no role in the treatment of ME patients, as the two examples above demonstrably show how serious things can become when children's own feelings and reality is being suppressed.
AYME and AfME are doing a great disservice to ME patients by endorsing research into such a business as LP. Children need to be listened to not brainwashed.
These experiments on vulnerable children, endorsed by one charity purporting to represent children with ME, are a scandal.
Why is the emphasis not put on promoting, funding and implementing biomedical research into ME?
We would appreciate these points being made and minuted at the APPG meeting.
Thank you again for inviting Invest in ME to be part of the APPG for ME.
Kathleen McCall
Chairman Invest in ME
Invest in ME
(UK Reg. Charity Nr. 1114035)
PO Box 561
Eastleigh
SO50 0GQ
Hampshire
UK www.investinme.org
Support ME Awareness - support biomedical research into ME
A compassionate and moving exposé, bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illnesses of the 21st Century.
“We are extremely disappointed that the editor of Science has published an “editorial expression of concern”, regarding the Lombardi et al. study. The authors of the Lombardi study believe that it is premature to conclude that the negative studies are accurate or change the conclusions of the original studies and we fully agree,” said Annette Whittemore, President of the Whittemore Peterson Institute. “Much of the work on this new retrovirus has yet to be performed, and we look forward to new studies which will support the results and findings described by these accomplished scientists. There has been no attempt to fully replicate this study to date. All of the negative studies have failed to use the methods, materials or processes used in the original study and many have been poorly designed. WPI researchers will continue to perform the critical research needed to help the patients who suffer from neuro-immune disease.” In addition, the WPI will continue to offer other scientific researchers the materials and methods necessary to perform a full and accurate replication study in the future.
About The Whittemore Peterson Institute
The Whittemore Peterson Institute is the nation’s first comprehensive translational research facility dedicated to neuro-immune disease research, treatment, education and outreach.
Secular Humanists seek to ban origins debate in the UK education system - CrISIS campaign is launched against discussing creation - http://creation.com/humanist-crisis-campaign
by Andrew Sibley; Published: 17 May 2011
I would recommend the above article to you; it is on the Creation Ministries International website.
ME (myalgic encephalomyelitis) or, as the media and many doctors term it 'Chronic Fatigue Syndrome' (CFS), is a complex neurological condition leading to severe disability in many cases. About 250,000 people in the UK have this condition; up to 4 million in the USA and as many as 17 million worldwide.
Why are we petitioning?
For 30 years, the UK and American research establishments have either refused to fund research into ME/CFS in any meaningful way, or consistently funded research by psychiatrists who believe that ME/CFS has a 'biopsychosocial' basis (ie that it is psychosomatic, or all in our heads) the same thing they used to tell patients with diabetes and MS.
As any ME patient can tell you, you only have to spend a week with this condition to know it is not imaginary. Some patients have lived for more than 30 years severely disabled, unable to move, speak, think clearly and participate in any of the activities that make life worthwhile. Nobody would want to live this life, because a life with ME is no life at all.
Despite monopolising Government research budgets, the psychiatrists have failed to prove that ME is a psychological (or 'biopsychosocial') condition, or that their suggested treatments are effective.
Worse, ME/CFS has become a dustbin diagnosis for patients with all kinds of illnesses where chronic fatigue is one of the symptoms. This means that, not only are real ME patients not getting research funding for causes and treatments, but those who are wrongly diagnosed are not getting appropriate treatment either.
What needs to happen?
While the UK and USA Governments, research and medical establishments continue to ignore the problem, scientists around the world have produced some 4,000 peer-reviewed, published scientific papers which show clearly that there are systemic, biological changes in the bodies of ME/CFS patients. This is the research direction that is most likely to lead to finding a cause - and a cure.
Who are we petitioning, and what do we want?
So far, every study funded by Britain's Medical Research Council (MRC) into this condition has had a psychiatic basis. It is time the MRC stopped funding psychological research into ME.
In January, the MRC announced £1.5m funding for research into the causes of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). Applications for funding must be made this June, and the MRC will make its decisions on which proposals to fund in November 2011.
It is important that ALL of this funding is focused on biomedical research. It must not be wasted going over old ground or down any more blind alleys. It must capitalise on the work already done by such eminent scientists and physicians as Dr Jose Montoya of Stanford University, Dr Judy Mikovits of the WPI, Dr Harvey Alter at the NIH, Dr Nancy Klimas of the University of Miami, Dr Gwen Kennedy and her team at the University of Dundee and many others.
250,000 patients in Britain need to know they are no longer being ignored, sidelined or labelled as psychiatric cases. They need answers; they need treatments and they need them without any further delays.
While WPI researchers continue to review the data presented by Dr. Singh, we believe that it is important to correct and clarify information regarding this study. Several individuals were consented to participate in this study as positive controls to enable Dr. Singh to develop assays to detect multiple variants of XMRV. Of these, only three were from the original Lombardi et al. cohort, two of whom were among those positive for a XMRV. A XMRV was isolated from one of those patient's PBMCs, cloned and fully sequenced (GenBank® accession number GQ 497343 as identified in the NIH geneticsequence database). Sequence data demonstrates that this virus is clearly distinct from XMRV (vp62)and 22Rv1. A budding virus particle from that sample was pictured in an electron micrograph in Lombardi et al. Virus from that patient sample was also transmitted both from the PBMCs and plasma to an uninfected indicator cell line, LNCaP. Finally, these results were supported by a separate lab using serological methods as reported by Lombardi et al.
Twelve additional samples from individuals not included in the Lombardi et al. study were independently collected by a third party and sent directly to Dr. Singh’s lab. Some of these subjects were positive for highly related sequences, including the polytropic and modified polytropic sequences identified by Lo et al., as determined by the WPI prior to the publication of the Singh study. Many of those subjects were also positive for ENV antibodies to a XMRV (vp62 and other XMRV family members), indicating that these patients had an immune response to a XMRV.
In addition, WPI investigators and others have provided evidence of sequence diversity between a XMRV (vp62), other similar XMRVs detected by WPI (designated internally with a number corresponding to a clinical isolate), a XMRV (p variant), and other related human gamma retroviruses. Therefore, we believe that it is vitally important that investigators interested in furthering the understanding of blood borne XMRV as a human pathogen use a proven positive clinical isolate as the control when developing tests to detect this newly discovered human retrovirus.
WPI and the U.S. clinical laboratory performing XMRV tests pursuant to a license agreement with WPI have extensive controls in place to prevent and detect contamination. Approximately three thousand tests have been performed on patient samples to date using clinically validated tests; about one third have been found to be positive. Multiple sequences from these three thousand samples have been submitted to GenBank® and are awaiting publication. It is critical, in light of these findings, that all treatment decisions are left to physicians and their patients, including the use of antiretrovirals.
While WPI researchers acknowledge that there is still much to be learned about the lifecycle and in vivoreservoirs of this family of human gamma retroviruses, we remain confident in the results reported in Science by Lombardi et al. Most importantly, we are committed to human gamma retroviral research in neuro-immune disease and will continue to offer our help to the medical and scientific community when requested.
Having previously read “The Great Cholesterol Con” by Dr Malcolm Kendrick, I fairly recently came across this book by Dr Uffe Ravnskov and would certainly recommend it.
Product Description -
Do you know
...what REALLY causes heart disease?
...that heart patients haven't eaten more saturated fat than other people and stroke patients have eaten less?
...that people with low cholesterol become just as atherosclerotic as people with high?
...that high cholesterol is not a risk factor for women or diabetics?
...that high cholesterol is not a risk factor for old people although by far most heart attacks occur after age 65?
...that old people with high cholesterol live longer than old people with low?
...that the lipoproteins protect us against infectious diseases and probably also against cancer?
The author is a scientist himself and has published more than 80 papers and letters in the scientific press critical to the cholesterol campaign, for which he has won two international awards. In his new book, which includes updated and simplified sections from his previous one (The Cholesterol Myths), Ravnskov also presents his own idea about the cause of heart disease, an idea that explains all the findings that do not fit with the present view.
From the Back Cover -
Did you know?
...that cholesterol is not a deadly poison, but a substance vital to the cells of all mammals?
...that your body produces three to four times more cholesterol than you eat?
...that the internal production increases when you eat only small amounts of cholesterol and decreases when you eat large amounts?
...that heart patients haven't eaten more saturated fat than other people?
...that stroke patients have eaten less?
...that people with low cholesterol become just as atherosclerotic as people with high?
...that high cholesterol is not a risk factor for women?
...that high cholesterol is not a risk factor for old people although by far most heart attacks occur after age 65?
...that many of the cholesterol-lowering drugs are dangerous to your health and may shorten your life?
...that the cholesterol campaign creates immense prosperity for researchers, doctors, medical journals, drug producers and the food industry?
I would also recommend the article “The Dangers of Low Blood Cholesterol” on Barry Groves’ “Second Opinions” website; this is not the kind of thing the medical world wants us to know about! See http://www.second-opinions.co.uk/low-chol.html
I would recommend the above article to you, written by Kevin Short of Anglia ME Action. It was sent to The Lancet, The Royal Colleges and Newspapers on April 28 2011.
April 2011
Report: Complaint to the relevant executive editor of the Lancet about the PACE Trial articles published by the Lancet (March 2011; made public April 2011)
Submitted by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry
(With grateful acknowledgment to members of the ME/CFS community)
Preamble:
"In 1996 when psychiatrists Drs. Peter White and Simon Wessely co-authored a review of “Chronic Fatigue Syndrome” (Joint Royal Colleges Report, CR54, October 1996), a Lancet editorial roundly condemned the publication (“Frustrating survey of chronic fatigue”, Volume 348, Issue 9033, Page 971, 12 October 1996): “Psychiatry has won the day for now …. The sixteen-strong committee was top-heavy with psychiatric experts, so the emphasis on psychological causes and management is no surprise …. We believe that the report was haphazardly set-up, biased, and inconclusive, and is of little help to patients or their physicians”.
"In 2011, when Professors White and Wessely collaborated in a multi-centre trial of cognitive behaviour therapy and graded exercise for “CFS”, peer review at The Lancet failed to identify the same faults. “Psychiatry has won the day” again - but only because once again the same people have not been subjected to sufficiently rigorous scientific scrutiny."
Also, still regarding the PACE Trials publication in the Lancet, a letter entitled "Ignorance is not an option" has been sent by Invest in ME to the Editor of the Lancet, Dr Richard Horton - http://www.investinme.org/IIME%20Letter%202011-04%20Lancet.htm
People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble – isolated from society.
A bubble formed from -
Misinformation
ME is a neurological illness.
For decades there has been a coordinated policy of misinformation about ME presented by vested interests. ME is a neurological illness accepted as such by the UK government as directed by the World Health Organisation.
Ireland is the latest country to ban ME patients from donating blood - the reason being "to protect blood recipients (i.e. patients who receive blood)"
Why would this be necessary unless ME were of an infectious origin?
(USA, Canada, Australia, New Zealand, Malta, Norway and the UK have also banned blood donations from people with ME)
Medical ignorance
Too little professional awareness, too much trust in establishment organisations such as NICE and the MRC, lack of funding of proper research - all of these contribute to medical ignorance.
This ignorance so often pervades the NHS. However, things are changing slowly. Aided by the biomedical research which has been presented at conferences such as those organised by Invest in ME and its European ME Alliance partners the level of knowledge about ME is growing. Biomedical research has proven beyond doubt that there is a viral origin for most ME patients. This education will continue.
Over 60 outbreaks of ME have been recorded worldwide since 1934
ME is 3 times more prevalent than HIV/AIDS – twice as prevalent as MS
25% of ME patients are severely affected - housebound, bedbound
25,000 patients are children
ME is the largest cause of long term sickness absence from school for pupils and staff
Misdiagnosis
Misdiagnosis is one of the most sinister consequences of a healthcare system which is based on lack of funding for biomedical research and which attributes all unknown conditions to a waste-bin diagnosis.
Discrimination
ME patients are dealt a double blow. Not only do they have to deal with the effects of a neurological illness - they also have endure the discrimination which is given to patients by healthcare providers, social services and the DWP. Although the UK government officially recognises ME as a neurological illness it allows the disease to be treated as though it does not exist.
No funding for biomedical research
Since IiME was founded we have been campaigning for a national and international strategy of biomedical research into ME.
ME patients have no approved drugs for treatment
ME patients have no access to specialist ME consultants
ME does not discriminate, anyone can be affected
Government apathy
Each successive government of recent years could have acted on the need for more research, for removal of vested interests from decision-making related to ME, for proper attention to education for children with ME, for human rights, ....etc
The attitudes of successive ministers of health has, up to now, been negligent.
The Chief Medical Officers of England have declined to attend every one of Invest in ME's international ME/CFS conferences which take place every year just a few hundred metres from the CMO's office.
The government and the CMO can change this - yet they continue to do nothing.
Isolation
Many people with ME will experience the isolation that comes with ME.
Most parents will see this awful consequence of this disease as it plays out its effect on their child/children.
This is one of the cruellest consequences of a disease which receives no attention, no funding of biomedical research, no interest from the healthcare providers, no policy from the government and no sensible or informed reporting from the media.
It is time for this to end.
Help us Burst Our Bubble
For ME Awareness Month May 2011 we ask for support to raise awareness of these issues by distributing our leaflets to all healthcare providers, politicians, journalists and to family, friends and others.
Burst Our Bubble
Download our Awareness Poster (in black or white versions) and distribute for ME Awareness Month:
Invest in ME will also be sending out these as leaflets during ME Awareness Month. We are happy to provide leaflets to groups and to support awareness campaigns (if we have the financial resources to do so)
There is no centre of excellence in the UK that treats and researches ME as a physical illness.
UK Charity Invest in ME wants to change that - Please Help Us
Support our efforts to get a UK centre for examinations and biomedical research into ME.
Extracts from Professor Leonard Jason’s Presentation at the NIH State of the Knowledge Workshop on ME/CFS, Bethesda, Maryland, 7th – 8th April 2011 by Margaret Williams http://www.meactionuk.org.uk/Jason-at-SOK-Workshop.htm
At the National Institutes of Health “State of the Knowledge” (SOK) Workshop on ME/CFS held in Bethesda, Maryland on 7th-8th April 2011, Professor Leonard Jason from DePaul University, Chicago, gave a hard-hitting presentation, repeatedly emphasising the absolute necessity for researchers to be looking at the same disorder.
He specifically mentioned the UK PACE Trial (carried out by Wessely School psychiatrists) and noted the controversy flowing from that trial.
The PACE Trial Principal Investigators (PIs) intentionally sought as heterogeneous a cohort of “fatigued” people as possible in order to enhance both recruitment to the trial and the alleged “generalisability” of the Wessely School’s cognitive re-structuring and aerobic exercise programme to as many “fatigued” people as possible (Trial Identifier:3.6).
Such intentional heterogeneity obviously captured people with affective disorders in which “fatigue” is a prominent feature, yet the PIs assert that they were studying patients with “CFS/ME” (which they insist is the same disorder as ME/CFS, a complex neuroimmune disorder) when their definition of “CFS/ME” has few of the features of classic ME/CFS. Indeed, the pathognomonic feature of ME/CFS -- post-exertional fatigability with malaise -- is not required in their definition of “CFS/ME” which has on-going “fatigue” as the primary symptom.
This deliberate conflating of different disorders by the Wessely School has caused dismay amongst international scientists studying classic ME/CFS, who at the SOK Workshop emphasised the near-impossibility of validating the existing biomarkers when such divergent cohorts of subjects are used (for example, by psychiatrists with fixed beliefs about the nature of “CFS/ME” who continue to disregard the biomedical evidence and the key diagnostic criteria contained in the 2003 Canadian Guidelines).
Despite the fact that the UK Department of Health accepts ME/CFS as a neurological disorder of unknown origin, in its recent submission to the NICE “consultation” process regarding any necessity to update the NICE Clinical Guideline 53 on “CFS/ME” that recommends only CBT/GET for people with “CFS/ME”, The Royal College of Paediatrics and Child Health referred to the disorder as: “a psychological illness with physical manifestations” (http://tinyurl.com/65dv56g) and on the Great Ormond Street (childrens) Hospital website, “CFS” is categorised as a somatic problem: it is placed in “Department of Child and Adolescent Mental Health” section and then under “Feeding & Eating Disorders Service” is to be found the following: “emotional eating difficulties (e.g. food phobias) or in the context of somatic problems such as chronic fatigue syndrome”
(http://www.gosh.nhs.uk/website/gosh/clinicalservices/DCAMH/Homepage?forumid=331851).
Perhaps unsurprisingly, this website contains frank misinformation about the results of the PACE Trial; for example, the PACE Trial was not a “controlled” trial as claimed; the Oxford criteria are not “standard diagnostic criteria for CFS” when “CFS” is deemed to include ME -- they are used only by the Wessely School who produced them in 1991; PACE participants were not “confirmed as free of mental health problems such as depression and anxiety”; participants did not meet the (proposed) “London Criteria” for myalgic encephlaomyleitis, but a version compiled by the Chief PI (Professor Peter White) himself, which was basically the Oxford criteria without psychiatric illness; SMC (specialist medical care) was not universally provided by a doctor “with specialist experience in CFS”; 22 of these “experienced specialists” were in fact trainees (all from the same centre) who, by virtue of being trainees, could not be called experts experienced in the medical care of people with CFS.
Thus despite hollow assurances from the Department of Health, the grass roots situation in the UK remains dire for people with ME/CFS, so the following quotations from Professor Jason at the SOK Workshop are of particular relevance to patients themselves and to the various agencies of State to which the Wessely School are advisors on “CFS/ME”:
“If investigators select samples of patients who are different in fundamental aspects of this illness because of ambiguities with the case definition, then it would be exceedingly difficult for investigators to consistently identify biomarkers”.
“In summary, any scientific enterprise depends on reliable and valid ways of classifying patients into diagnostic categories. When diagnostic categories lack reliability and accuracy, the quality of the treatment and clinical research can be significantly compromised”.
“If CFS is to be diagnosed reliably across health care professionals, it is imperative to deal with criterion variance issues and provide specific thresholds in scoring rules for the selected symptomatic criteria”.
In the discussion that followed his presentation Jason was emphatic:
“Those folks who have primarily affective disorder need to be differentiated”.
“I think the key issue is the defining of the sample and in our current scientific publications, the basic description of who these samples are is completely inadequate, and we’ve got to do something to change that….if we don’t tackle that issue…our foundation is just going to be shaky”.
During this discussion, Professor Nancy Klimas commented cogently: “Here we are, quite some 20 years into this, still talking about the bloomin’ case definition”; she registered her frustration and pointed out that lack of a unified case definition prevents the existing biomarkers for neuroimmune disorders being utilised.
Professor Jason responded:
“There needs to be a decision as to which are the symptoms and which are the tests that we want to use (so that) everybody uses those particular symptoms and asks questions the same way – standardised questionnaires, and if we can get that accomplished by everybody being on the same page with that, I think we would do enormous benefit for our field”.
“What I’m really suggesting, because a lot of what we’re talking about here is biological markers, is that ultimately, if we have samples that are different in different labs and have different characteristics, it’s going to be very difficult for us to get the types of consistency of the biological markers…The problem we’re all faced with is that when we don’t get common findings across labs, it’s very easy for the media – and others – to look at those results and not understand the complexities that we’re faced with and (they) say – oh, you don’t find the same abnormalities, you don’t find the same lab findings, it’s not like HIV (where) you find it everywhere…. ultimately you end up (with it) being thought of as a psychogenic illness, and that’s the problem. It’s the consequence of …attributions being made that I think are not correct”.
At this point, the Editor of the journal “Brain, Behaviour and Immunity” asked a question and then agreed to publish such standardised criteria in his journal, an undertaking that was well-received.
Professor Jason ended the discussion by referring to the UK PACE Trial:
“There’s tremendous confusion about who’s in particular samples. Those of you who have been reading about the PACE trial….one of the big issues was, was it the Oxford criteria, was it the Fukuda criteria, or the international, or the Reeves empiric case definition, and I think a lot of controversy came out of that trial in part because people were trying to figure out who were their patients, and I know that they did some subgroup analyses in that study, but I think it’s absolutely critical for this diagnostic issue to be tackled head-on”.
Will the Wessely School psychiatrists pay any attention to this critical issue of diagnostic criteria for ME/CFS or will they persist in ignoring the international scientific research community and implacably insist that “CFS/ME” is a somatoform disorder that is reversible, if not curable, by their own brand of directive psychotherapy as they have done for the last 25 years, to the serious detriment of both patients and progress in medical science?
From the Whittemore Peterson Institute for Neuro-Immune Disease -
March 23, 2011
Dear Neuro-Immune Disease Advocate,
WPI invites you to join together in a global awareness month for Neuro-Immune Disease beginning May 1, 2011.
Your participation in a variety of activities can help bring worldwide awareness of debilitating acquired diseases that impact the lives of millions around the world.
Help us deliver the global message that it is time to fund the critical search for answers.
Join the movement by visiting us at: www.anida.co and sign the official guestbook starting April 1.
Neuro-immune diseases such as M.E., CFS, fibromyalgia, autism, chronic Lyme disease, and Gulf War illness have no FDA approved bio-markers or treatments for the underlying causes of disease.
Please listen to the audio clip on the above website. The things described in the clip – being told you have depression, locking people up in mental health wards – are still happening to ME patients. They would never dare to do such things to people with other neurological conditions such as MS and MND.
Incidentally, the mother mentions that the tests done on her son came back negative; that is almost certainly because they are doing the wrong tests! There are plenty of tests that do show up problems in ME – I have a folder full of abnormal test results!
Diana Newcombe's 20-year-old son Oliver went from being a fit and active student to becoming bed-bound and unable to speak after having the flu in 2009.
Myalgic encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is characterised by prolonged fatigue associated with symptoms such as muscle pain, headaches and sore joints.
The NHS watchdog NICE has produced guidelines on how to treat it, but some argue that it often still goes undetected.
Speaking to the BBC, Mrs Newcombe says Oliver was initially told he had depression.
March 2011
6th Invest in ME Conference
The Invest in ME Conference this year has as it’s theme “The Way Forward For ME – A Case For Clinical Trials For ME/CFS”, including the latest advances in ME/CFS research and treatments. Speakers, most of whose names are well known in ME circles, include Dr David Bell, Dr John Chia, Prof Kenny De Meirlier, Dr Judy Mikovits, and Annette Whittemore, with Prof Malcolm Hooper as conference chairman. It is CPD accredited and will take place in London on 20th May.
All the ME sufferers that I have heard from over the last couple of weeks have been extremely disappointed and concerned regarding the results of the PACE Trial; ME support groups such as the 25% ME Group and the ME Association had previously called for the Trial to be stopped. It was therefore something of a shock when one ME charity, the Association of Young People with ME (AYME), issued a statement welcoming the outcome of the Trial. As a result, a petition has been set up under the following title -
“AYME does not represent the ME community and its actions have now become harmful to ME sufferers”
