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!
Today we can announce the dates of our 2015 Biomedical Research Colloquium and international ME Conference.
The Biomedical Research into ME Colloquium 5 (BRMEC5) will now take place over two days from 27th-28th May 2015.
The date for IIMEC10 –The 10th Invest in ME International ME Conference 2015 – will be 29th May 2015.
Both events will be in London.
With support from our colleagues in the European ME Alliance we will build on the international collaboration which has been facilitated by the conferences and colloquiums in recent years and which is the way forward for ME research.
It is encouraging to see our Colloquium gaining in credibility every year.
Last year almost 50 researchers from nine countries attended the BRMEC4 Colloquium.
We will continue try to bring in new researchers from outside the ME field to enhance the knowledge and ideas – something we have been doing from our first researchers meeting four years ago.
A distinct microsite for the conference events will be available shortly.
Invest in ME (Research) would like to thank our European ME Alliance Sweden colleagues at RME for supporting the conference already with a donation toward the costs of the conference.
International ME Conferences
The Invest in ME International ME Conferences are CPD accredited biomedical conferences which provide a platform for the latest information and biomedical research on myalgic encephalomyelitis.
Invest in ME began the conferences in 2006 and they are now an annual event in May. The conferences attract some of the most renowned speakers from all over the world and are valuable sources of education and information for healthcare professionals, doctors, nurses, researchers, ME support groups and people with ME and enable an excellent insight into these areas and the issues currently facing the healthcare and ME patient communities.
The conferences and, later, the Colloquiums have been generating new research and opportunities for years. The charity has now put in place the key building blocks to take ME research into this century with high-quality biomedical research in world class organisations being performed by some of the best researchers.
Our conferences have been facilitating discussions and sharing of information between patients, researchers and clinicians for almost 10 years.
International Biomedical Research into ME Colloquiums
The Invest in ME International Biomedical Research into ME Colloquiums began as a way of bringing together researchers from around the world in a round-table discussion of ME research and ideas. Over the years this has broadened to sharing of experiences, data and plans. We now have a basis for creating a strategy of international biomedical research which will hold far greater promise of creating proper funding and awareness of biomedical research into ME.
Use the link here to see reviews of all of the IiME conferences and colloquiums.
Massive vaccine cover-up confirmed: Secret documents prove vaccines cause autism
(NaturalNews) The ongoing debate over whether or not vaccines cause autism would probably take on an entirely different tone if key information that has been mostly censored from the public was fully brought to light. Hidden documents that have been locked away for more than two decades reveal that the MMR vaccine for measles, mumps and rubella does cause autism, and regulators, drug executives and various others have known about this for a long time.
A Freedom of Information Act (FOIA) request filed in the UK has forced the Department of Health to release confidential documents outlining the details of MMR's initial approval back in the 1980s. These documents reveal that GlaxoSmithKline (GSK), the manufacturer of the MMR vaccine Pluserix, knew that there were problems with the vaccine causing a high rate of adverse events in children. Among these were encephalitis and other conditions associated with autism.
Concerned that the British government was withholding information about MMR's dangers from the public, the FOIA request was filed in response to the growing number of vaccinated children who were coming down with debilitating gut problems, brain damage and other symptoms believed to be associated with MMR. As it turns out, these suspicions are now validated.
"We have compensated cases in which children exhibited an encephalopathy, or general brain disease," admitted Tina Cheatham, Senior Advisor to the Administrator of the Health Resources and Services Administration of the U.S. Department of Health and Human Services (HHS), in an email to CBS News' Sharyl Attkisson. "Encephalopathy may be accompanied by a medical progression of an array of symptoms including autistic behavior, autism, or seizures."
CDC, Pediatrics, US government and Merck all admit MMR vaccine causes autism
This admission is huge, as encephalopathy following vaccination is a known trigger of autistic symptoms, and something that the confidential documents from the UK also admit. GSK, the British government and various other players all kept this information under wraps, even after brave souls like Dr. Andrew Wakefield came forward publicly with data linking the MMR vaccine to autism-related health outcomes.
Reading between the lines, health authorities have, in fact, linked MMR to autism -- but they won't come right out and say it. Rubella, for instance, the German measles component of MMR, has been known to be a cause of autism since the 1960s. The U.S. Centers for Disease Control and Prevention (CDC) has admitted this publicly, as has the National Immunization Program (now the National Center for Immunization and Respiratory Diseases). Even Merck & Co. a major manufacturer of MMR vaccines, has admitted that vaccines in general can cause autism.
"[R]ubella (congenital rubella syndrome) is one of the few proven causes of autism," stated Walter A. Orenstein, M.D., former Assistant Surgeon General and Director of the National Immunization Program, in a 2002 letter to the UK's Chief Medical Officer.
"[R]ubella virus is one of the few known causes of autism," explained the CDC on its "FAQs (frequently asked questions) about MMR Vaccine & Autism" page, which has since been removed from public view. It is still available in some web archives.
Dr. Julie Gerberding, M.D., M.P.H., the current President of Merck's Vaccines Division, is also on record as admitting that people with a predisposition to mitochondrial dysfunction can develop autism following vaccination. A minimum of 20 percent of vaccine-induced autism cases are associated with mitochondrial dysfunction.
"Now, we all know that vaccines can occasionally cause fevers in kids," stated Dr. Gerberding back in 2008 during a segment on House Call with Dr. Sanjay Gupta titled "Unraveling the Mystery of Autism."
"So if a child was immunized, got a fever, had other complications from the vaccines. And if you're predisposed with the mitochondrial disorder, it can certainly set off some damage. Some of the symptoms can be symptoms that have characteristics of autism."
For more, visit:
Secret British MMR Vaccine Files Forced Open By Legal Action
Invest in ME are pleased to announce that our initial research fund target objective of £350,000 has been reached.
In the weeks following the Invest in ME Conference 2013 events in London the charity announced its intention to initiate a UK clinical trial of rituximab for ME in cooperation with UCL. After discussions with our advisor, professor Jonathan Edwards and the UCL research team under Dr Jo Cambridge, the charity organised a visit to Bergen by Professor Edwards to discuss with the Norwegian researchers Professor Mella and Dr Fluge. For the last year Invest in ME and our supporters have been raising awareness of the trial and raising funds.
Now, thanks to patients with ME and their families and friends - and with enormous and generous help from a foundation's pledge in memory of Roger Hendrie - the Invest in ME/UCL clinical trial project clinical has reached the initial target of £350,000.
This is a truly amazing effort for which so many can deservedly congratulate themselves.
We again thank our supporters who have done so much to change things (see earlier tribute to our supporters - an international event).
We continue our efforts to raise the further funds for a contingency research fund as the preliminary B-cell study which is now underway may result in changes to the trial.
We thank all those who are supporting this trial and we hope for continued support.
Invest in ME and its supporters have achieved this by themselves.
One event can change everything - one small charity one BIG Cause.
Click here to see/download our posters for the IIME/UCL rituximab trial.
Breaking News: Chemical Changes in Immune Cell DNA from ME/CFS Patients
We are pleased to announce the first study to report epigenetic modifications throughout the genome in female ME/CFS patients compared to a matched sample of healthy controls. This research conducted in partnership and funded by the Solve ME/CFS Initiative (SMCI) was published today in the high impact and open access journal PLOS ONE (http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0104757).
The Solve ME/CFS Initiative launched our Research Institute Without Walls in 2010 and Dr. Patrick McGowan was one of our first grantees to use this innovative infrastructure. Together with his graduate student, Will de Vega and SMCI’s Scientific Director, Suzanne D. Vernon, they found evidence of distinct epigenetic profiles in immune and other physiologically relevant genes in a selected group of female ME/CFS patients. Will de Vega, who performed much of the work, is a PhD candidate in the department of Cell and Systems Biology at the University of Toronto. His thesis research concerns how environmental factors and ME/CFS impact immunological processes, and their effects on clinically relevant phenotypes.
Epigenetic modifications affect the way genes are turned on or off without changing the inherited gene sequences. “Knowledge about the epigenetics of ME/CFS could potentially lead to alternative treatment options for sufferers, from targeted lifestyle interventions to new pharmacological treatments”, notes McGowan. There were many epigenetic modifications in and around immune genes that affect the way these genes are regulated and expressed. These types of changes would be expected to affect immune cell function in ME/CFS patients. “This is the first in a series of exciting results coming from McGowan’s lab at the University of Toronto”, says Suzanne D. Vernon. “By understanding these epigenetic differences in the immune cells of ME/CFS patients, we can begin to decipher the molecular mechanisms of the immune dysfunction that we suspect is at the root of ME/CFS”.
McGowan started this ME/CFS epigenetic research in 2012. His quick success is a testament to the power of patient-centered research approach used by the Solve ME/CFS Initiative. “Our study would not have been possible without the funding provided by the Solve ME/CFS Initiative, patient samples from the SolveCFS BioBank, and the collaborative support of the Initiative’s scientific director Dr. Suzanne D. Vernon” says McGowan.
The Solve ME/CFS Initiative will continue to partner with McGowan and his team at the University of Toronto to further this exciting work of epigenetics and ME/CFS. This field of research holds promise for identification of diagnostic biomarkers and potential treatment and interventions for ME/CFS. For right now it is further demonstration of the indisputable biological basis of ME/CFS.
Today is severe ME Awareness Day, dedicated to those who suffer the worst effects of Myalgic Encephalomyelitis. Naomi Whittingham describes life with severe ME
By Naomi Whittingham
9:58AM BST 08 Aug 2014
Ordinarily, illness is measured in days or weeks; and for the unfortunate months or even years. Then there are those of us for whom illness, pain and suffering is measured in decades. This is my twenty-fifth year of being ill: a quarter of a century spent mostly in housebound, bed-bound isolation.
I have had ME since the age of twelve, after catching a routine virus from which I never recovered. Within months I was unable to move, speak or open my eyes. I had to be spoonfed. Constant, agonising headaches forced me to lie in a dark and silent room. I was so ill that my family and doctor feared I could die at any moment.
ME affects around 250,000 people in the UK, with 25% so severely affected that they are house or bed bound. It is now widely recognised as a neurological condition although some doctors still mistakenly believe the cause to be psychological, or that it can be cured by exercise. ME involves every bodily system and symptoms include flu-like malaise, severe pain, muscle weakness, cognitive dysfunction and acute sensitivity to sensory stimulation.
After spending my early teenage years in a death-like state, I began to slowly improve. At 37, I remain in a wheelchair most of the time and dependent on full-time care from my mother, now 63, but I consider myself fortunate. If you met me during a better spell in the day, you might not realise there was much wrong with me. You wouldn't see the collapse into bed afterwards; the desperate need to lie in silence to prevent an escalation of symptoms such as pain, muscle jerking and vomiting.
In the twenty-five years of my illness I have watched my peers become teenagers and then adults. My journey to maturity has been marked by very different rites of passage: I have had to learn to feed myself again, to speak, to sit up. I have had to re-build self-belief from the shattering effects of having a misunderstood illness. It is destroying enough to experience the collapse of every bodily system; it brings one close to ruin when the cause is suggested as lack of motivation or a wish to escape life.
I have never driven a car or made a journey unaccompanied; I have never had a job or a boyfriend or a home of my own. I will never have the children I would love. For many women this last would be a devastating blow. Swamped by so many other losses, I barely register it.
Chronic illness is a bereavement: a lengthy grieving for shattered dreams. Despite this, I am not a tragic figure. Decades of intense suffering have given me a deep appreciation of life, of the simple pleasure of a sunset or spring flowers. I have a wide network of friends with ME and those of us who are well enough communicate through email and Facebook.
Recently someone asked me what I would do if I were well for a day. The possibilities for that one, cherished day not confined to bed or a wheelchair are too numerous to comprehend. Getting out of bed unaided, stepping out into the garden, making a cup of tea, styling my hair, shopping, going to the sea for the first time in years: basic, spontaneous activities which most people take for granted.
For me and thousands of others locked in this prison, the only prospect of release lies in quality biomedical research, of which there is far too little. There are promising developments in the study of viruses and immune abnormalities, and the hope of identifying diagnostic biomarkers and eventually drug treatments. But lack of funding means that progress is slow and in the meantime lives are wasted.
I will never get my youth back; but progress in understanding ME is urgently needed, before future generations lose theirs.
Voices from the Shadows, an award-winning documentary, tells the story of several severe ME sufferers, including Naomi and Sophia Mirza, who died aged 32. www.voicesfromtheshadowsfilm.co.uk
Invest in ME contacted Llewellyn King to ask for permission to republish this article – as it chimes so well with the views of the charity regarding progress, obstructions to progress, and the need to begin sowing the seeds of change.
Llewellyn King is executive producer and host of “White House Chronicle” on PBS, a columnist for the Hearst-New York Times Syndicate and a commentator on SiriusXM Satellite Radio.
I consider this a manifesto for the ME/CFS community. These are my thoughts, after nearly five years of watching the anguish and the neglect that surrounds this disease.
The manifesto states what I think should be done now.
And “now” is an important word.
There is a story that Winston Churchill, when he was very old and sick, summoned the gardener at his beloved country home in Kent, Chartwell, and asked him to plant an oak tree in an open space.
The gardener, looking at his enfeebled employer, swallowed and said,
“But, sir, an oak tree takes a hundred years to grow.”
“Then you'd better plant it now, hadn't you?” said Churchill.
During World War II, Churchill used this same execution imperative approach to work. Churchill used to stick little, pre-printed notes — long before the days of Post-it notes -- on his paperwork for staff that read, “Action This Day.”
One of the first things that struck me about ME/CFS, when I started writing and broadcasting on the subject, was how slow the pace of progress was, even as the suffering suggested the need for immediate action.
The second was how stingy public and private funding for research was then and is now.
I want my friends and loves, who are in the grip of a relentless affliction, whose days are torn from the calendar of hell, to be cured in my lifetime -- and I am 74. I want to be able to hold them as whole happy people; the people they were before they were struck down by an enemy they did not provoke, a monster they do not deserve, an unseen captor, a malicious jailer that takes daily life and makes it into a tool of torture and punishment.
One year, the CFIDS Association of America was able to declare proudly that it had raised $2 million.
The National Institutes of Health, a federal agency that should be pushing research, granted a paltry $5 million for ME/CFS in 2013. By comparison, in that same year, I learned that a consortium of foundations was sponsoring a green power marketing initiative at $6 million a year.
I have spent nearly 50 years writing about federal funding for energy, science and technology, and the sums of money spent has been in the tens of billions of dollars. One company gets more than $60 million year-in a year-out for nuclear fusion research -- and I see nothing wrong with that.
But when I look at the federal funding for ME/CFS research, I am aghast: It is not funded at a level that can be expected to produce results. It is, to my mind, a crime against the sick; morally, if not criminally, indictable.
"Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders."
To allow the scale of suffering that attends ME/CFS, without making research on the disease a national priority, is close to wilful neglect; an abrogation of the high purposes of Hippocrates' calling.
Other governments are not free of guilt for the suffering – and the United Kingdom stands out among the many offenders.
These governments have been seduced by the fraudulent blandishments of the psychiatric lobby. If a ME/CFS patient refuses to accept a psychiatric diagnosis, he or she can either be imprisoned or forced to suffer the insinuation that they are not physically sick, even if they cannot get out of bed. There are cases in Europe where patients refusing the prescribed psychiatric treatment have been imprisoned, as happened most recently to Karina Hansen in Denmark.
The United States is experiencing a boom in natural gas production and the deployment of solar panels on rooftops.
These successes are the manifestation of substantial research money committed in the 1970s, and sustained since then.
Science needs certainty of support, both political and financial, to triumph.
The key is sustained funding; a splash here and a dash there just won't do -- it won't do anything. ME/CFS researchers need to concentrate on their work, wherever that work takes them, free from the stress of insecure funding.
ME/CFS deserves the level of effort that might lead to success. It is not getting it now, and it never has had it. It is appalling that Dr. Ian Lipkin, the highly respected virus hunter, is trying to raise $1.27 million through crowd funding to investigate the role of microbiome in ME/CFS. What we are seeing is a scientist forced to beg.
Yet this fundamental research, with application for diseases beyond ME/CFS, is at the frontier of biomedical science.
If we, as a nation, are to believe that we are in the forefront of science, we must be in the forefront of biomedical research as well as the forefront of computers, telecommunications, materials and physics.
We almost humbled polio, and developed powerful drug therapies for AIDS.
We can transplant vital organs and gave hope to the leper. The advances came neither cheaply nor easily, but they have saved lives beyond counting and eased suffering beyond enumeration.
Why not for ME/CFS? Why not?
There is eloquence in the voices of the community. But they are widely distributed and, sadly, they fall mostly on ears of those who already know them — the sick, their families and their advocates.
The voices need to be heard widely, need to be channelled and need to be focused. A million points of light won't do it. A laser, a great beam, will do it.
There are three principal reasons why these voices are not heard by those who need to hear them:
1 ME/CFS is a hard story for the media to grasp.
2. ME/CFS has no celebrity doing what Elizabeth Taylor did for AIDS, what Jerry Lewis did for Multiple Sclerosis, or what Michael J. Fox is doing for Parkinson's Disease.
3 ME/CFS has no presence in Washington.
Of the three, the last is the most critical to act on, and it is the one that would produce the most measurable result. Simply stated: Being on the ground in Washington every day is the essential step the community has to take.
To get results in Washington, you need to-see-and-be-seen in the daily life there. Letters and petitions do not have nearly the impact as a Washington denizen talking to a decision-maker in person.
Happily this would amount to one very visible person, who strolls the halls of Congress, lunches at the clubs and restaurants, like the Cosmos or Metropolitan clubs, or the Monocle Restaurant on Capitol Hill. Once, I was mentioned in the Wonkette blog because I was spotted entering Bistro B, a favourite restaurant of the powerful, and those who think they are powerful.
If your children attend one of the power schools, like St. Alban's or Sidwell Friends, contacts can be made and deals can be done at the events.
A friend of mine enlisted President Bill Clinton's help for a cause because their children went to the same school.
It may strike you as banal, but it is the Washington political game.
Learn to play it.
Washington is a society of people who are impressed with each other.
It is important to be known. If you are invited to the annual White House
Correspondents' Association or Alfalfa Club dinners, you are known. The next step is to be known for ME/CFS advocacy.
Once known, the perfect advocate/lobbyist will morph into a resource, a voice for others in Washington: a source of information for congressional aides trying to understand the budget requests of agencies, and a source of information for reporters writing about diseases of the immune system.
A voice in Washington puts pressure on government agencies to do the right thing, and on members of Congress to authorize and appropriate money.
The advocate/lobbyist can learn, through the hearing process, about the diligence and transparency of the agencies and the quality of their operations; to see if they are doing the job or treading water, to see how transparent their operations are and the quality of professionals operating programs.
Another salutary source of pressure in Washington is the press corps. It covers not just politics but also the functioning of government.
The pinnacle of power in the corps are still The Washington Post, The New York Times and The Wall Street Journal.
But the news agencies, The Associated Press, Bloomberg and Reuters, followed by a veritable media army that cover politics and programs, including Politico, The Hill, Roll Call, National Journal, and the specialized medical publications also play important roles.
Fifty years ago, the center of media activity was New York. Now it is Washington. A professional advocate for ME/CFS needs to cultivate the media and to be comfortable with the currency of Washington and to trade in it.
That currency is information.
Washington is a great information market. The successful lobbyist/advocate is, by the nature of the city and its functioning, an information broker.
The sums of money that will be needed to accelerate research cannot be calculated and could be very substantial.
Research funding, above all, needs to be sustained at predictable levels.
The pharmaceutical industry figures that a new drug can cost upwards of $1.2 billion. I mention it only to hint at the vast amount of money needed for drug research and development.
How much ME/CFS will need and for how long is an existential question?
Money stimulates research, attracts new young minds to the field and leads to success. Right now, there is so little money funding so few researchers in ME/CFS.
In the United States, that success may be a long time in coming – too long for those for whom today will be a living hell, as yesterday was and tomorrow will be.
I figure that for as little as $1 million, a start toward a Washington presence can be made. That would cover one advocate/lobbyist, one office and one assistant for one year; not a smidgeon of attention from a giant lobbying firm, but a dedicated ME/CFS standard-bearer. Funding should grow within a year, as the ME/CFS cause comes out of the shadows.
I operated a small business in Washington for 33 years, and I am confident that a new ME/CFS presence there will reverse the disease's funding fortunes at NIH, increase media awareness, and cause the big foundations to sit up and take notice. It would give ME/CFS the kind of presence that other diseases with active advocates – COPD, ALS, MS and others -- have in Washingon and the nation.
If this is not done the government will continue to ignore the case for ME/CFS. Worse, the new billionaires who are beginning to throw real money into biomedical research will not know about ME/CFS. It will be hidden in plain sight much as it has been from the wider public.
ME/CFS needs a place on the national agenda if it is to be understood and cured in reasonable time, and if the very best minds are to be attracted to the task and to stay with it.
That Churchill oak needs to be planted now, and in sight of the U.S. Capitol.
False Allegations of Child Abuse in Cases of Childhood Myalgic Encephalomyelitis (ME)
A peer reviewed academic article by Jane Colby, Executive Director of the Tymes Trust
There is no cure for ME (Myalgic Encephalomyelitis). In its absence, management regimes are prescribed, typically based on cognitive behavioural therapy (CBT) and graded exercise therapy (GET). In the case of children this may involve the application of Child Protection powers to enforce treatment. NICE confirms that patients may withdraw from treatment without effects on future care, but parents who decline, or withdraw children from, management regimes, which may have worsened their illness, can find themselves facing investigation for child abuse or neglect, or have their child forcibly confined to a psychiatric unit. Tymes Trust has advised 121 families facing suspicion/investigation. To date, none of these families has been found to be at fault. Subsuming ME under the heterogeneous term Chronic Fatigue Syndrome (CFS) has confounded research and treatment and led to disbelief over its severity and chronicity. As evidence points to persistent viral infection, recommendations have been made to separate ME from CFS. International consensus criteria for ME emphasise post-exertional deterioration as distinct from fatigue. If the child with ME deteriorates under management regimes, re-diagnosis with a psychiatric condition can mask treatment failure and lead to blame attaching to the parent. A more constructive redeployment of resources away from Child Protection investigations into appropriate practical support for these seriously unwell children, should be developed.
Jane has worked with the All Party Parliamentary Group on ME and the All Party Parliamentary Group on Abuse Investigations in regard to the issues raised in this paper. Jane is a former Head teacher. She was co-author of the largest epidemiological study of ME to date, and prepared the questionnaire for the BBC Panorama ME documentary. She was a member of the Chief Medical Officer’s Working Group on CFS/ME. A former severe ME sufferer, Jane is also the Executive Director of Tymes Trust.
Mr Speaker: Mr Bradley has sought leave to present a public petition in accordance with Standing Order 22. The Member will have up to three minutes to speak on the subject.
Mr D Bradley: Go raibh míle maith agat, a Cheann Comhairle. Caithfidh mé a rá go bhfuil mé thar a bheith buíoch díot as an deis seo a fháil chun an achainí seo a chur faoi do bhráid agus faoi bhráid an Tionóil. Thank you very much, Mr Speaker, for the opportunity to present this petition on behalf of Newry and Mourne ME/Fibromyalgia Support Group to you and the Assembly. As you know, both of those conditions are extremely serious. They leave the sufferers in great pain and devoid of energy.
For many years, the Newry and Mourne ME group has been working hard to inform people about the illnesses and to provide advice and support to them. For the most part, the work is carried out by volunteers, who, largely, are patients who suffer from ME and fibromyalgia. I have great admiration for people who use their own time and resources to help others who suffer from the same illness. Today's petition asks the Minister of Health to adopt the Canadian consensus criteria on ME and fibromyalgia.
The criteria have been agreed by a plethora of experts in Canada and other countries throughout the world. The Newry and Mourne support group and many others believe that they offer the best option for sufferers to find relief from the illness and, ultimately, to be cured of it.
As I said, Mr Speaker, I am honoured to present the petition to you on behalf of the group. It has been signed by hundreds of people. The group has done amazing work in promoting it. I am sure that our Health Minister will read the petition and the documentation contained in the file very carefully. I hope that his response will be a positive one. On that note, Mr Speaker, it only remains for me to thank you very much.
Mr D Bradley moved forward and laid the petition on the Table.
Mr Speaker: I will forward a copy of the petition to the Minister of Health, Social Services and Public Safety and to the Chair of the Health Committee, Maeve McLaughlin.
Market failure can be sign of fatigue
I thought that this is an interesting ME-related article on the Reuters blog. Apart from the fact that the author seems to view ME and CFS as the same condition, it is well worth reading.
The author is a Reuters Breakingviews columnist. The opinions expressed are his own.
Modern economies work to meet consumers’ needs. So if needs are not met, that must be an economic failure, right? Healthcare suggests otherwise. Sometimes, unhelpful ideologies get in the way of economics delivering the goods.
Chronic fatigue syndrome (CFS) – also known as myalgic encephalopathy (ME) – is a case in point. The economic benefit of treating this difficult condition should be material for patients, drugmakers and society. Yet the treatment is poor.
CFS is still a mystery. It is identified mostly by its long list of symptoms, starting with persistent exhaustion. What seems to be happening is an interconnected network of malfunctions in the nervous, circulatory and digestive systems. Estimates of the number of sufferers vary greatly. Something like 0.1 percent of the population is plausible.
Medical ignorance reflects a lack of research, and the lack of research reflects a lack of professional respect. Despite the devastating effects on those who have it – many sufferers spend years bedridden – most doctors and funding agencies did not take the disease seriously until recently.
Even now, research funding is scarce and many doctors tell sufferers that there is nothing fundamentally wrong with them. Their symptoms are dismissed as physical manifestations of psychological difficulties. The psychological reductionism is not only medically irresponsible. It also doesn’t make sense in the modern economy.
CFS is the sort of complicated condition that our high-tech, high-expense healthcare is supposed to address well, or at least make a serious effort to do so. More crassly, this is a reasonably common disease that attacks many people in the prime of life. That makes it expensive in terms of lost activity and the cost of caring. And it looks like a disease which can only be dealt with by long courses of expensive drugs – just what pharmaceutical companies crave.
Why isn’t the healthcare industry – the delivery system, the research complex and the profit-seekers – more interested?
One theory is that the disease is not quite awful enough to catch the public’s attention. It rarely kills directly and it comes with few symptoms that show up well in pictures. A related suggestion is that the right celebrity endorsement has not yet come along. Many patients and their advocates see a malign conspiracy, aiming to empower psychiatrists or reduce disability payments.
There is something in all these explanations. However, the most important reason that this physical condition was left so long to the psychological crowd is intellectual: it does not fit with the traditional model of infectious disease.
The model was articulated in its crude form by the German bacteriologist Robert Koch in 1883. The principle is simple: the body is made ill by the invasion of some pathogen, an outside organism which disrupts the natural functioning of one or more systems. In other words, for each ailment there is a single external cause which can be identified and isolated.
In theory, scientists have steadily retreated from this model of “me against the invader.” It turns out that many pathogens are present in small quantities in healthy bodies and that many otherwise healthy substances in the body can turn toxic. The biological interactions are delicate and multi-faceted. The organism rarely works perfectly, so the boundary between well and ill is often fuzzy.
The newer theory has not been well translated into practice. The old biological model persists because it works so well for most of the conditions that doctors know how to treat. It also suits the standard specialised research methodology. CFS, which crosses systems and appears to involve many tiny failures, simply does not fit the Koch model.
Fortunately, the situation is improving. There are some scientists taking an interest, even if they have to rely on crowdfunding. The leading researchers do see the disease as a complex and multi-system failure. Their work could lead to a medical, intellectual and economic triumph.
But the severe lack of mainstream financial support is holding them back. That makes no sense, even on the crassest and narrowest economic calculation. Treatments or vaccines for CFS are likely to turn out to cost less than the value of the labour that is currently lost to the disease. And such a narrow weighing of benefits and costs probably understates the upside. For one thing, there could be collateral economic gains if CFS research leads to a better understanding of other debilitating conditions.
There is also a less concrete but ultimately more important motivation. Knowledge is a human good, and one of the virtues of the modern industrial economy is that it has created and paid for much more of this good. A deeper understanding of chronic fatigue syndrome would almost certainly add ever more, by developing a better idea of how the human body functions. Even if no cure is found, the knowledge itself is a worthy economic goal.
Tuesday, June 03, 2014
by Mike Adams, the Health Ranger
(NaturalNews) Mercury tests conducted on vaccines at the Natural News Forensic Food Lab have revealed a shockingly high level of toxic mercury in an influenza vaccine (flu shot) made by GlaxoSmithKline (lot #9H2GX). Tests conducted via ICP-MS document mercury in the Flulaval vaccine at a shocking 51 parts per million, or over 25,000 times higher than the maximum contaminant level of inorganic mercury in drinking water set by the EPA.(1)
The tests were conducted via ICP-MS using a 4-point mercury calibration curve for accuracy. Even then, the extremely high level of mercury found in this flu shot was higher than anything we've ever tested, including tuna and ocean fish which are known for high mercury contamination.
In fact, the concentration of mercury found in this GSK flu shot was 100 times higher than the highest level of mercury we've ever tested in contaminated fish. And yet vaccines are injected directly into the body, making them many times more toxic than anything ingested orally. As my previous research into foods has already documented, mercury consumed orally is easily blocked by eating common foods like strawberries or peanut butter, both of which bind with and capture about 90% of dietary mercury.
Here are the actual results of what we found in the influenza vaccine from GSK (lot #9H2GX):
Aluminum: 0.4 ppm
Mercury: 51 ppm
All tests were conducted via calibrated, high-end ICP-MS instrumentation as shown in these lab videos.
Doctors, pharmacists and mainstream media continue to lie about mercury in vaccines
As you take in the scientifically-validated fact that mercury exists at very high concentrations in flu vaccines, keep in mind that most doctors, pharmacists and members of the mainstream media continue to stage an elaborate lie that claims mercury has "already been removed from vaccines."
Never mind the fact that the use of mercury is admitted right on the package containing the vaccine vial. And now, Natural News has scientifically confirmed the mercury content of flu vaccines using high-end laboratory instrumentation. The existence of high mercury in flu shots is irrefutable.
Anyone who claims mercury has been removed from all vaccines is either wildly ignorant or willfully lying. And anyone who would knowingly allow themselves to be injected with mercury is probably already a victim of the kind of brain damage well known to be caused by mercury.
Insert admits "no controlled trials"
Shockingly, the package insert for this flu shot readily admits the vaccine has never been subjected to scientific clinical trials:
"There have been no controlled trials adequately demonstrating a decrease in influenza disease after vaccination with Flulaval," the package insert claims in tiny text (that no one reads).
This is printed right on the insert, yet no one in the mainstream media will ever report this astonishing admission. This statement, all by itself, is a confession that flu shot marketing is a fraud.
Across the board, flu shots are heavily propagandized and promoted with the implication that they have zero risks while offering 100% protection. No one in the mainstream media ever questions this claim even though the package insert openly admits the claim is complete hokum and has never been subjected to scientific scrutiny.
No evidence of safety or effectiveness in pregnant women
But that's not all the insert admits. It also says:
"Safety and effectiveness of Flulaval have not been established in pregnant women, nursing mothers or children."
And yet everywhere you go in America, there's a Walgreens, CVS or Wal-Mart pharmacy promoting flu shots for pregnant women. Never mind the fact that flu shot safety has never been established in pregnant women, and never mind the obvious fact that you should never inject a pregnant women with mercury in the first place!
Who needs scientific proof when you've got the full propaganda of the media and the government to back you up? Anyone who dares question the scientific validity of flu shot safety for pregnant women is immediately attacked as being an opponent of all vaccines.
Apparently, the only requirement to be accepted by the vaccine community is to believe in medical fairy tales while abandoning all critical thinking and scientific skepticism. In the vaccine industry, genuine science is simply not allowed. No wonder two former Merck virologists filed a False Claims Act with the federal government, accusing the company of knowingly fabricating its vaccine efficacy data to trick the FDA.
Never proven safe or effective in children, either
Flu shots are heavily promoted for children, right alongside mumps and measles vaccines. But it turns out flu shots are never scientifically tested for safety or efficacy in children.
Check out what the insert for this vaccine directly admits:
"Safety and effectiveness of Flulaval in pediatric patients have not been established."
It's right there in black and white... an open admission. Yet flu shots are aggressively marketed to parents and children as if they were Tic-Tacs. The real beauty of the entire vaccine industry scam is that no scientific evidence is required! You don't have to have any proof, all you have to do is believe in vaccines as a matter of faith.
Never tested for cancer risk
Do flu shots cause cancer? The honest, scientific answer is that these shots are never tested for that. As the insert readily admits:
"Flulaval has not been evaluated for carcinogenic or mutagenic potential, or for impairment of fertility."
Believe it or not, the Flulaval vaccine also warns that no one should be given this shot if they've already received another flu shot at some previous time:
"Do not administer Flulaval to anyone... following previous administration of any influenza vaccine."
And yet, amazingly, people are encouraged to get flu shots year after year, even though the package insert directly warns against anyone taking a series of influenza vaccines.
Admission that flu shots contain formaldehyde and sodium deoxycholate
The same insert that admits this vaccine has never been proven safe in children or pregnant women also openly admits that it contains neurotoxic chemicals.
Per the insert, each dose of Flulaval contains up to 25 mcg of formaldehyde (a neurotoxin) and up to 50 mcg of sodium deoxycholate.
This is on top of the 25 mcg of mercury you'll get in every dose. And remember, this is mercury that's injected directly into your body, so you absorb 100% of this mercury (unlike mercury you eat, where most of it sticks to food fibers and is transported out of your body).
Total admission that flu shots cause seizures, convulsions and Guillian-Barre syndrome
Ever wonder what all these toxic chemicals and heavy metals cause in humans? Flu shots vaccines, it turns out, are already known to cause a huge number of devastating health effects.
Predictably, there is a massive disinfo campaign across the mainstream media, Wikipedia, medical journals and government propaganda agencies (CDC, FDA, etc.) to pretend that flu shots have no risks whatsoever. Yet the insert that comes with the vaccine openly admits the flu shot has been linked with a long, frightening list of serious adverse effects. As this Flulaval insert says (see photo below):
"In addition to reports in clinical trials, the following adverse events have been identified during postapproval use of Flulaval...
If you take flu shots, you are being poisoned by quacks
The upshot of all this is that flu shots utterly lack any scientific evidence of safety of efficacy. We don't know if they work at all, in other words, and neither does the vaccine manufacturer. Neither do the doctors or medical staff who administer them. Flu vaccines are injected into people purely as a matter of blind faith in the very same companies that have already been convicted of felony crimes.
Trusting a flu shot made by a corporation of felons is a lot like trusting the purity of heroin you buy from a street dealer. Both flu shots and street heroin have at least one thing in common, by the way: neither has ever been tested for safety.
We also know that flu shots contain neurotoxic chemicals and heavy metals in alarming concentrations. This is irrefutable scientific fact. We also know that there is no "safe" form of mercury just like there is no safe form of heroin -- all forms of mercury are highly toxic when injected into the body (ethyl, methyl, organic, inorganic).
The only people who argue with this are those who are already mercury poisoned and thus incapable of rational thought. Mercury damages brain function, you see, which is exactly what causes some people to be tricked into thinking vaccines are safe and effective.
Technically, you'd have to be stupid to believe such a thing, as the vaccine insert directly tells you precisely the opposite.
Share this story, spread the truth
Share this story with everyone who needs to know the truth about flu vaccines. This message needs to get out. Every fact stated in this article is 100% true and verified. The quotes from the Flulaval package insert are on-the-record statements from GlaxoSmithKline.
And for the record, I am not an opponent of the theory of vaccination. What I'm against is the continued use of toxic heavy metals and chemicals in vaccines. I'm also opposed to the wildly fraudulent marketing of vaccines. If any other product were marketed with the same lies and deceptions as vaccines, they would be immediately charged with fraud and misrepresentation by the FTC. But somehow when the vaccine industry commits routine fraud, everybody pretends it isn't happening.
Even with all the marketing fraud taking place, if the vaccine manufacturers would stop poisoning the population with vaccine additives (by removing mercury, formaldehyde and other chemicals from their products), nearly all opposition to vaccines would rapidly disappear.
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): The need of objective assessment, accurate diagnosis, and acknowledging biological and clinical subgroups. An Extract -
Although Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) are often considered to be synonyms, the diagnostic criteria for ME and CFS define distinct clinical entities.
Cognitive impairment, (muscle) weakness, circulatory disturbances, marked variability of symptoms, and, above all, post-exertional “malaise”: a long-lasting increase of symptoms after minor exertion, are distinctive symptoms of ME.
This latter phenomenon separates ME, a neuro-immune illness, from chronic fatigue (syndrome), other disorders and deconditioning. The introduction of the label “CFS”, but more importantly the diagnostic criteria for CFS have generated much confusion, mostly because chronic fatigue is a subjective and ambiguous notion.
CFS was redefined in 1994 into unexplained (persistent or relapsing) chronic fatigue, accompanied by at least four out of eight symptoms, e.g. headaches and unrefreshing sleep.
Since the diagnosis ME doesn’t require “fatigue” and post-exertional malaise and cognitive impairment are not obligatory for the diagnosis CFS, the criteria for ME and CFS define two different patient populations.
However, most of the research into ME and CFS in the last decades was based upon the multivalent CFS criteria, which define a heterogeneous patient group.
Due to the fact that fatigue and other symptoms are non-discriminative, subjective experiences, research has been hampered. Despite the use of subjective and ambiguous criteria and measures, research has established typical abnormalities in ME/CFS repetitively, e.g. immunological aberrations, oxidative and nitrosative stress, neurological anomalies, circulatory deficits and mitochondrial dysfunction.
After describing the context, including the controversy about the nature of ME and CFS, the diagnostic criteria, the etiology, the pathophysiology and presumed effective therapies (Cognitive Behavioral Therapy: CBT and Graded Exercise Therapy: GET), this article reviews the historical context of ME and CFS and the diagnostic criteria (Ramsay, Holmes, Fukuda and International Consensus Criteria) and substantiates why ME and CFS are two partially overlapping, partially disjoint clinical entities.
After stressing the importance of an accurate diagnosis, the article proposes various methods to assess characteristic symptoms objectively. Various authors have questioned the physiological nature of the symptoms and qualified ME/CFS as somatisation.
By using objective measures endless discussions due to using questionnaires and subjective measures can be avoided, e.g. with regard to the physiological origin of symptoms, the level of disability, and the proposed positive and/or negative effects of CBT and CGT in specific patient well-defined groups.
The article then summarizes various characteristic abnormalities which have been repeatedly observed in ME/CFS patients or substantial subgroups repeatedly and the potentially relevant clinical and biological subgroups.
The remainder of the article focuses on recommendations for improvements of patient care (assessment and diagnosis) and more effective research in the future.
To improve future research standards and patient care, it is crucial
* that patients with post-exertional “malaise” (ME) and “CFS” patients without post-exertional phenomena are acknowledged as two separate clinical and research entities;
* that typical symptoms of ME and CFS are assessed objectively as much as possible; by using repeated exercise tests (CPETs) and cognitive tests;
*that the diagnosis of ME and CFS in research and clinical practice is based upon accurate criteria;
* that well-defined clinical subgroups of ME and CFS, e.g., patients with orthostatic intolerance or patients with sudden-onset, are investigated in more detail;
*that biomarkers, e.g. immunological status in rest and after exertion, are used to distinguish and investigate biological subtypes in research;
*and that trials into the efficacy of therapies use objective measures of the clinical status and biomarkers to establish the effects of these therapies in ME or CFS patients or subgroups thereof impartially, e.g. by a (positive) change in the oxygen uptake at the anaerobic threshold and cognitive tests scores.
(NaturalNews) Today's custom is that if a person has a more serious health issue, conventional medicine is the unquestionable source of answers. Although results often appear to be helpful and "life-saving" on the surface, there often comes serious long-term damage that severely compromises quality of life. In that vein, here are three hospital procedures that can ruin long-term health.
Chemotherapy has been widely used with one or more cytotoxic drugs, with the expectation that this deadly poison will kill off rogue cancer cells and leave the patient with enough healthy cells to regain their health.
Researchers from the Fred Hutchinson Cancer Research Center in Seattle, Washington, observed the effects of chemotherapy on healthy cell tissue and found that it damages the DNA of healthy non-cancerous cells which in turn causes them to produce molecules that in turn produces more cancer cells.
Even worse, they also found that a major side effect to this procedure is that cancer cells grow more virulent than they were before the treatment. As a result these "super" cancer cells no longer respond to chemotherapy, which means it becomes even more deadly.
Take a more natural approach to kill off cancerous cells, without severely damaging the body, and look to eliminate all forms of sugar.
Vaccines have become a heavy debate that has left many people wondering whether vaccinations are the panacea to all the dreaded illnesses we can contract, or simply a poisonous injection that has little effectiveness compared to a healthy and holistic lifestyle.
Recently, shocking statements were noted on the package insert of the "Diphtheria and Tetanus DTaP Toxoids and Acellular Pertussis Vaccine Adsorbed" (also known as the Tripedia vaccine) that stated that this vaccine had not been evaluated for its "carcinogenic or mutagenic potentials or impairment of fertility."
It was also noted "adverse events reported during post-approval use of Tripedia vaccine include idiopathic thrombocytopenic purpura, SIDS, anaphylactic reaction, cellulitis, autism, convulsion/grand mal convulsion, encephalopathy, hypotonia, neuropathy, somnolence and apnea. Events were included in this list because of the seriousness or frequency of reporting."
However, some may believe that vaccine side effects are worth the long-term immunity they provide against infectious disease, as opposed to building up natural immunity. Barbara Loe Fisher, president and co-founder of the National Vaccine Information Center, explains the error in that thinking:
"Whereas natural recovery from many infectious diseases usually stimulates lifetime immunity, vaccines only provide temporary protection and most vaccines require 'booster' doses to extend vaccine-induced artificial immunity."
So to maintain that artificial immunity, people are often subject to additional injections full of dangerous preservatives and agents, which puts their long-term health at more risk.
Take a more natural immune building approach by increase immune building foods and herbs and getting plenty of vitamin D, while reducing and eliminating processed foods, refined sugar, alcohol, and glutinous grains.
Prescription antibiotics are perhaps the most widely used form of medication, and have saved the lives of many with deadly bacterial infections. However, much like chemotherapy, antibiotics do not distinguish between good and bad, and as a result wipes out all bacteria in its path.
With more than 100 trillion good bacteria in the body (10x more than cells) that play a critical role in overall health and well-being, killing them is not an effective answer to maintain good health. In fact, destroying those helpful bacteria will slowly but surely destroy digestive and immune function, which can then result in severe complications like Candida and cancer.
Look into more natural antibiotics like garlic, colloidal silver, oil of oregano, Echinacea, and manuka honey.
In October 2013 evidence was collated that disputed – indeed disproved – Professor Sir Simon Wessely’s long-held belief that disorders including ME/CFS, fibromyalgia, Gulf War Syndrome and interstitial cystitis are but different parts of the same “elephant”, the “elephant” being a functional somatic disorder: “Many of these syndromes are dignified by their own case definition and body of research….We question this orthodoxy and ask whether these syndromes represent specific diagnostic entities, or are they rather more like the elephant to the blind man – simply different parts of a larger animal?” (Lancet 1999:354:936-939). The article also provided evidence that Wessely was equally wrong about the Camelford drinking water catastrophe (Professor Sir Simon Wessely -- Right or Wrong? http://www.meactionuk.org.uk/Right-or-Wrong.htm ).
Whilst some internet commentators question the benefit of re-visiting the past and wish only to move onwards, others hold the view that dismissal of the damage done to sick people by the wrongful ascription of a mental health label to a physical disorder hinders proper understanding and prevents similar damage from being repeated in the future, since nothing constructive has been learned from the unnecessary iatrogenic suffering and no-one has been held accountable for it.
With this in mind and with the emergence of further autopsy evidence, it is timely to reconsider the enormity of the wrong perpetrated by Wessely upon the people of Camelford (a small town in Cornwall), since the whole issue has once again surfaced and deserves global attention.
It will be recalled that in July 1988 residents of Camelford were poisoned when 20 tonnes of aluminium sulphate were accidentally pumped into their drinking water supply; seven people died; 25,000 suffered serious health effects and 40,000 animals were affected (Dr Douglas Cross: The Ecologist:1990:20:6:228-233).
In 1995, Wessely and his co-psychiatrist Anthony David wrote an editorial in The Journal of Psychosomatic Research entitled “The Legend of Camelford: Medical Consequences of a Water Pollution Accident” in which they said: “Further health monitoring of the population at risk was considered…unnecessary…since the results would ‘be heavily influenced by people’s fears of long term effects’ ” and they noted that symptoms being reported “were put down to anxiety”. David and Wessely commented that: “Psychological ‘damage’ can lead to successful compensation claims (and) it was clear that at Camelford a physical attribution was required by sufferers”. They concluded: “We suggest that the most likely explanation of the Camelford findings is that the perception of normal and benign somatic symptoms (physical and mental) by both subjects and health professionals was heightened and subsequently attributed to an external, physical cause such as poisoning….It is probable that among those afflicted are a few individuals with pre-existing somatisation or abridged somatisation disorders…which were then diverted to fall in line with the prevailing complaints of the affected population….Future investigations of environmental incidents should recall that social and cultural factors are as important as medical ones”.
That same year the BMJ published a “re-assessment” of Wessely’s conclusions (Still waters. 5th August 1995:311:395); it found that “mass hysteria was largely responsible for the furore”.
Trump sets out the evidence that dead villagers have been found to have had high levels of aluminium in their brain, suffering early onset dementia and a relatively early death.
As Trump says: “It was the worst case of mass poisoning in British history. The effects were noticed within 90 minutes and included diarrhoea and vomiting, severe joint aches, and blistering. Hands and lips stuck together. Hair turned green, fingernails blue”.
Trump exposes yet more aluminium-linked deaths than were previously known about and sets out factual evidence obtained at autopsy by Christopher Exley, Professor in Bioinorganic Chemistry at Keele University, who found abnormally high levels of aluminium per gram of dry tissue in samples from Camelford residents.
Professor Exley noted that a finding of more than one microgram of aluminium per gram of dry tissue was “a little unusual”, and that samples from deceased Camelford residents were significantly high, with one such sample being more than 94 micrograms per gram of dry tissue.
At the time, scientists found levels of aluminium in the drinking water of Camelford to be between 500 and 3,000 times the maximum judged acceptable under EU law.
In his article, Trump considers numerous cases who were affected, including the case of one of the deceased who had undergone tests, scans and biopsies while still alive which showed high levels of aluminium in his blood and bones and which caused the protein plaque deposits that led to his early death from dementia. The man developed epilepsy and long before the onset of dementia, he suffered constant memory loss, kidney problems, skin complaints, gum disease, ear infections and brittle bones. The blood flow in his brain was also restricted.
As Trump makes clear, in 1988 the privatisation of the water industry was looming and Camelford was a major embarrassment. In 2001 the then Environment Minister, Michael Meacher, said that the issue had “become a tug of war between the truth and an attempt to silence the truth”.
Wessely’s part in the dismissal of such devastating suffering as mere “perception” and his confident assertions that there was no evidence of long-term adverse effects on health as a consequence of the drinking water contamination should not be under-estimated when considering the Camelford catastrophe.
Should he not at last admit that he was wrong and publicly apologise?
A meta-analysis including 530,525 people, partly funded by the British Heart Foundation, and published in the Annals of Internal Medicine has just come to this conclusion:
Conclusion: Current evidence does not clearly support cardiovascular guidelines that encourage high consumption of polyunsaturated fatty acids and low consumption of total saturated fats 1.
Or to put it another way, there is no evidence that saturated fat consumption has anything, whatsoever, to do with causing heart disease, or strokes. Once again I get to say ‘I told you so.’ Ah, the four most satisfying words in the English language. That is, when arranged in that particular order.
So, eat butter, drink milk, and throw away the horrible sugar-loaded low fat yoghurt. Go to France and enjoy the highest saturated fat diet in Europe and you, too, can enjoy the French rate of heart disease. Yes, of course, the lowest in Europe.
But now what happens? You see, the entire edifice of the cholesterol hypothesis is held together by two links in a chain. Link one is that saturated fat consumption raises cholesterol levels. Link two is that raised cholesterol levels then cause heart disease.
Various ‘experts’ have simplified this to the very simple equation:
A (saturated fat in the diet) > B (high cholesterol levels) > C (heart disease)
This is the cholesterol hypothesis, or the lipid hypothesis, and it has driven medical thinking for the last sixty years.
I have had it painstakingly explained to me, by very clever people, exactly how saturated fat raises cholesterol levels. Indeed, you will find ‘evidence’ for this almost universally accepted fact in literally thousands of clinical studies. Here is what Wikipedia has to say on the matter
‘There are strong, consistent, and graded relationships between saturated fat intake, blood cholesterol levels, and the mass occurrence of cardiovascular disease. The relationships are accepted as causal 2.’
Okay, let us accept that eating saturated fat does raise cholesterol levels. However, if consumption of saturated fat does not increase the rate of heart disease then….. Then raised cholesterol levels can have nothing whatsoever to do with causing heart disease. Just keep chasing the implications of that statement around in your head for a while.
So what happens now? We now have a cholesterol/lipid hypothesis that just had its head blown off. Yet, it still continues to wander about, unaware that it is actually dead.
As everyone knows you can chop the head off a chicken and it can wander about for years. I was also informed, when I was an open-mouthed child, that you could shoot a dinosaur through the head and it would continue to blunder about for some time, the rest of its body blissfully unaware that it was actually dead.
Well, the cholesterol hypothesis has just been shot dead, but I suspect it will continue to rampage about, stomping on puny humans for many years, before it finally keels over and admits that it is dead.
But I say, farewell Cholsterolosaurus. You are now a deceased hypothesis. Gone to meet your maker. You just don’t know it yet. Because the people that believe in you do not understand logic.
With healthcare where better to learn than from patients?
As with much of the research that is and has been funded, under the subterfuge of research into Myalgic Encephalomyelitis (ME), it seems a persistent theme of those entrusted with the future of people with ME and their families that they do not listen to patients.
Dr Clare Gerada, former chair of the Royal College of GPs, said at the last IiME international conference in 2013 that GPs know very little about ME.
She also said that patients know their illness better than doctors.
Common sense - something that is obvious one would think.
It would seem obvious that the UK Medical Research Council should not spend more on psychological research after the farcical and flawed PACE trial squandered £5 million and showed no objective improvements in patient outcomes and is clouded in controversy about methods used and claims being made . Yet it goes on.
It would seem obvious and self-evident that children should not be coerced into graded exercise when they are ill and unable to attend school. Yet the SMILE study is funded -funding given to the vice-chair of the MRC/SMC collaborative of charities and organisations. in our opinion an appalling and dangerous waste of funding to flawed theories. 
It would seem obvious that after being taken to a Judicial Review, by patients, that an organisation such as the UK National Institute for Health and Care Excellence (NICE) would show some humility toward a patient community that for a generation has been denied proper treatment, proper research or any form of respect. Yet NICE have again not listened and ignored calls for a review of their previously unacceptable guidelines for ME. 
Karina Hansen is 24 years old who has been seriously ill for some years and was cared for by her parents in Jylland, Denmark. On 12 February 2013 she was removed by force, under police supervision, by doctors and the local authority who seemingly gained access to Karina's residence without prior notice. Later, the parents informed that Karina had been admitted to Hammel Neuro Centre for assessment, treatment and rehabilitation. Karina's lawyer has now taken over the case. 
It would seem obvious that locking up a young adult, stopping her family from regularly seeing her, forcing psychiatric theories and practices on her would all qualify for an investigation into human rights.
Yet one year on from this situation Karina Hansen is still locked up, with sparse information about her condition, with rumours that a UK psychiatrist is "advising" the Danish psychiatrists on treatment, and uncertainty about her condition or her prognosis.
We cannot be sure what is the current status of Karina Hansen's health.
Despite Danish national ME organisations attempting to assist no help seems to have been accepted by those currently treating Karina and no information seems to be forthcoming - either from the Hammel Neurocenter or from the Danish Health Ministry.
Yet one thing is clear - patients are not being listened to.
And lessons are not learnt from past misfortunes.
This must change.
In an attempt to break this impasse IiME last year invited the physicians at the Hammel Neurocenter to the 8th Invest in ME International ME Conference. We followed up this invitation by contacting the Danish health minister Ms Astrid Krag and inviting her. 
We received no reply.
"He who is afraid of asking is ashamed of learning"
In order to support a fresh attempt at helping Karina Hansen the charity has offered the new minister of health, Nick Hækkerup, an invitation to meet with clinicians and researchers at the BRMEC4 research colloquium  and IIMEC9  events in London in May.
We have sent the invitation also to the physicians at the Hammel Neurocenter, again. IiME have offered to arrange confidential meetings with ME experts with a view to helping get the best attention for Karina Hansen. And we have offered a place at the research colloquium and at the conference.
We await a reply.
We know from too many stories of how severely affected ME patients suffer in silence and are often misunderstood by social workers, by doctors and by the healthcare system. 
We have written in the past that we feel it is impossible to marry the views of those who believe in the deconditioning/behavioural and wrong illness belief model of ME with those from the biomedical side.
Yet what we can agree on is that we need to exhaust all possibilities when a patient such as Karina is in such an awful situation.
This charity has never bothered with egos or status - what matters is progress.
But we recognise that to accept this invitation will be difficult for anyone whose professional authority is questioned. We understand this.
Yet it takes a greater degree of courage to accept an invitation such as this - to accept that learning never stops.
This invitation will cost everyone very little - yet it might help save a life.
As someone currently receiving hospice care due solely to the effects of ME, it irks me when people claim ME is not a fatal disease. Many, many ME-related deaths have shown that, at the very least, this disease can be fatal. I’ve seen people throw around a statistic which claims the death rate for this disease is 3%. What they don’t realize is most ME experts agree this number is grossly underestimated. Let me explain why.
ME is most similar in nature to another neurological illness, Multiple Sclerosis. Like MS, most ME experts agree there are certain subtypes which exist within the same illness name. The most commonly suggested categories (and those I personally see) are stable (illness remains the same or improves slightly with careful energy planning), relapsing/remitting (illness cycles through better and worse phases), and progressive/deteriorating (illness consistently deteriorates over time, regardless of planning and treatment). Of these three, the second category, relapsing/remitting, seems most common, while the last, progressive/deteriorating, is least frequently seen. Short of a miracle, no one ever fully recovers from ME.If you hear someone who claims to have had ME and is now functioning at 100% normal again, chances are extremely high they never had ME to begin with. Unfortunately, due to the high level of mis-education about this disease, thousands and thousands of people diagnosed with CFS believe they have ME when what they truly have is something completely different. Read my post on ME vs CFS for more on that.
That said, anyone who spends any significant amount of time studying the true nature of this illness will see the tremendous amount of damage it does to multiple body systems. It makes sense that this damage would have a shortening effect on most ME patients’ lives. For example, Dr. Elizabeth Dowsett says of ME patients, “20% have progressive and frequently undiagnosed degeneration of cardiac muscle which has led to sudden death following exercise.” Dr. Dowsett goes on to explain that the vast majority of these deaths are recorded as general heart failure rather than being officially linked to ME.
Herein lies the problem. Education and general knowledge of ME are so uncommon that for most of us, cause of death will be recorded as a secondary condition, even if that condition wouldn’t have developed without ME. This brings to mind another illness where sufferers nearly always die of secondary conditions: AIDS. People with AIDS generally die of secondary infections which their bodies are unable to fight off due to the effect of the AIDS virus on their system. Yet everyone knows AIDS is a terminal condition. We don’t deny its severity or its life-ending effect just because the final straw is nearly always a secondary condition. The same should be understood about ME.
ME is extremely hard on the body. One survey found people with ME most often die of heart failure, but we die from it on average over 20 years earlier than people without ME who die of heart failure. Cancer is another frequent killer of ME patients, but again, we tend to die from it decades earlier than non-ME cancer patients. Again, this makes sense, taking into account the strain ME places on nearly every body system, including our organs. It’s time for the world to wake up and realize the seriousness of this disease, but how can we expect others to recognize these facts if we ourselves refuse to face up to them?
Not everyone with this disease will die as a direct result of it. Other things can happen. But it is unrealistic and goes against what information we do have to believe that the tremendous strain placed on our bodies by this level of ongoing illness will have no effect whatsoever on the length of life we are allowed. Smoking shortens life. Overeating shortens life. Cancer and AIDS and kidney failure shorten life, despite allowing a much higher overall quality of life than ME. It only makes sense that ME shortens life as well, for some more than others. As someone whom doctors agree is currently dying from this disease, I beg you, don’t minimize its effects when speaking to the public. Don’t ignore people like me. Don’t let our deaths be in vain. Spread the word – ME does kill.
MEA chairman Neil Riley unpicks a central thread in the PACE Trial
MEA chairman Neil Riley unpicks a central thread in the PACE Trial
26 February 2014
‘Recovered’ – or do you only feel better?
“I feel so much better today, I’ll go back to work”. Ah, those halcyon days before you had ME. You were ill, you rested, you got better. Put simply, you had recovered.
So when a trial of treatments for people with ME/CFS reports that many of them had “recovered” you would imagine shouts of joy throughout the ME community. But joy there was none and for good reason. “Recovery” as defined in the PACE Trial, involving the use of Cognitive Behaviour therapy (CBT) and Graded Exercise Therapy (GET), is not what you think it is.
In medical trials there are ways of measuring your physical abilities and the SF-36 Function Scale is one that’s often used. It’s useful in comparing the burden of different diseases, differentiating the health benefits produced by different treatments, and in screening individual patients.
A score of 85 or above on that scale indicates that an adult, even one who was previously ill, is able to carry out most everyday tasks. The Pace Trial took as patients, adults with CFS/ME who had a point score of 65 or less, so they were clearly ill. They were given CBT and GET.
Now common sense suggests to me that if the treatments had worked well, those patients would have recovered. Their SF36 score would be 85 or over and off to work they would go. Singing merrily as they went. Well, I was wrong.
Originally PACE said that a score of 85 would indicate their patients had recovered their function but later decided achieving a score of 60 was sufficient. So patients could enter the trial “severely disabled” with a score of 65 or less and exit the trial “recovered” with a score of 60. Yes, you read that correctly.
Some could be as ill at the end of their treatments as they were when they started, yet, says PACE, they had “recovered” their physical function.
PACE does a wonderful sleight of hand here by claiming that as the fatigue score for patients showed improvement then that constituted recovery. Imagine you have just finished treatment for an illness and you’re asked: “How do you feel?” You might say: “I feel much better today thanks”. Feeling “much better thanks” is, as we know, not the same as “recovered”.
If I still can’t go back to work, play football or score my 85 points, then I’m not sure I’d feel “recovered” even if I didn’t feel as knackered as before.
Did PACE check their recovery measures by asking patients scoring 60 if they had recovered? Well, blow me down with a feather, they did not. Here’s a suggestion, dear researchers. Why not go back and ask those patients if they can now do what they did before they were ill.
Why is this important to you? Because the treatment you get from your GP is often based on trials. If those trial results are not founded on common sense but on inappropriate formula on the wrong set of data, what use are they? We live in a world where common sense rules, not in the world of PACE where “recovery” is not what it seems.”
This article first appeared in ME Essential, the quarterly magazine of The ME Association, in February 2014.
British Doctor Wants to Rescue ME Patient Held at Danish Hospital
A British doctor who specializes in the devastating disease myalgic encephalomyelitis (ME) has joined an international bid to free a young ME patient who was incarcerated in a Danish hospital a year ago. Dr. Nigel Speight wants to examine Karina Hansen, a sane but sick woman aged 25 who was forcibly removed from her home in Denmark on February 12 last year, and provide a second opinion as soon as her state-appointed guardian gives the go-ahead. If he gains access Dr. Speight believes he will be able to rescue the young woman from the hospital’s mental ward, where she is being held against her will and the will of her parents.
A group known as Justice for Karina Hansen (J4KH) has been petitioning for the young woman’s release from Hammel Neuro Center since May last year. Their most recent campaign was launched last Thursday, in the form of an open letter from her parents, Per and Ketty Hansen, to the man appointed by the Danish health authorities as Hansen’s guardian. In terms of the World Health Organization’s (WHO) A Declaration on the Promotion of Patients Rights in Europe (March 1994), that states patients “should have the possibility of obtaining a second opinion,” they have asked that Dr. Speight be allowed to see her and give a second opinion. The ME Association in Denmark has undertaken to pay his travel costs. J4KH reported on their Facebook page that the guardian had acknowledged receipt of the letter and undertaken to discuss the matter with “those in charge of her care.” The group has also launched a new change.org petition that already has more than 1,665 supporters.
The bedridden Hansen was taken from her home in Holstebro County last February, by five policemen who forced their way into the house; they were accompanied by two doctors, two social workers and a locksmith. Hansen called for help, but none of the family members could get past the police. She also phoned her sister, Janni asking for help, saying she did not know where she was being taken. The following day she phoned her mother from her cell phone asking how she could “get out of here.” She said she could not “take this.” They later discovered that she made a total of 43 calls and sent seven text messages before her phone battery went flat. The last call was to the police. The Hansens have asked for transcripts of the calls, but have received nothing. They have asked that her phone be recharged, but she has to do it herself and cannot get out of bed.
The Hansens said they were not given any reasons for the action and received no official paperwork relating to it. All they found was a note on the floor with a telephone number and message to say they would be contacted daily by a doctor. This did not happen, and they have not been permitted to visit their daughter because they do not support her treatment. Her sister, Janni has seen her briefly and is very concerned about her condition. The Hansens have taken legal action, but the court system is slow and drawn out.
Treatment for a Functional Disorder
Several days after Hansen’s removal, her parents received a letter from Nils Baile Christensen, a psychiatrist who said he was in charge of the treatment she would be given. Christensen is from The Research Clinic for Functional Disorders and Psychosomatics in Aarhus that is headed by Prof. Per Fink. Fink is the man who in 2010 introduced a new medical definition known as “bodily distress syndrome” (BDS) that categorizes all the “functional” syndromes that have physical symptoms that cannot be “explained by well-recognized medical illness.” Typical symptoms include headache; back, muscle and joint pain; stomach problems; shortage of breath; and fatigue. Illnesses that are lumped together under BDS include fibromyalgia, irritable bowel syndrome, chronic fatigue syndrome (CFS) and ME.
In Denmark functional disorders are labeled “psychosomatic,” and this particular clinic treats patients with cognitive behavioral therapy (CBT), graded exercise therapy (GET), and anti-depressant drugs. It has been reported that the clinic does not have experience treating ME patients that are severely ill, and there is widespread concern because it is known that any form of physical exertion can harm ME patients.
“All the other symptoms can be made worse by physical exertion, and mental effort can make the physical fatigue worse.”
Dr. Nigel Speight
Hansen has been sick since she was 16-years-old, and has been diagnosed with ME, an illness that the WHO has coded “neurological” since 1969. Over the years she has been hospitalized several times, undergoing treatments that did not help her condition, which had made her extremely light and sound sensitive. ME was confirmed the correct diagnosis by several doctors, at least one of whom expressly noted that she “had no depressive or psychotic tendencies.” By 2009 the young ME patient was completely bed-bound, in a great deal of pain, and constantly exhausted.
In 2012 Hansen’s general practitioner and another doctor visited her without an appointment, stating they had been told by the government’s Board of Health to “evaluate her mental state.” While they found she her to be “mentally competent,” they said she would have to see a psychiatrist. This is when her story first broke, Hansen choosing pictures that could be used for publicity. She also hired a lawyer and went through the legal procedure to give her parents power of attorney to make all decisions for her when she got too sick to be able to make her own decisions.
Even though Hansen’s health care category stated that she could opt to see any doctor she wishes to see, and that the Danish government cannot assign doctors to her, she was assigned a psychiatrist by the Board of Health. At that stage she had her own physician, a dietician, and a dedicated health care giver, and was living at home with her parents and family.
Even though Hansen has been diagnosed with ME on numerous occasions, the research clinic doctors have now changed the diagnosis to pervasive arousal withdrawal syndrome (PAWS). According to research published by the National Institutes of Health (NIH), PAWS (which was previously known as pervasive refusal syndrome) is a very rare “child psychiatric disorder” about which little is known or been written about. Symptoms include resisting help and withdrawing socially.
Dr. Nigel Speight
The British doctor Speight believes that the emphasis put on the efficacy of CBT has “most unfortunately” resulted in the disease being viewed from a psychiatric standpoint rather than as “a ‘genuine’ disease.” He is convinced that ME is “primarily an organic illness” with no psychological factors causing it. There may though be “secondary psychological consequences.” This is clearly a reason he wants to rescue the young Danish ME patient who has been held at the hospital in Hammel for a year.
Medical advisor to the British ME Association, and reputedly the most experienced and knowledgeable ME consultant pediatrician in the United Kingdom, Dr. Speight has played a major role in the rescue of many children with ME from “care proceedings” by social services. In a recent interview he said it was “a very painful area” and one of the most unpleasant things he has witnessed in his entire medical career. A lot of it comes from “a simple failure of doctors to protect patients by diagnosing them with ME/CFS“ which “leaves them at risk of being persecuted for alternative explanations.”
He said he had been involved in over 30 cases, all of which resulted in child protection proceedings. However, most had been averted by the “second opinion” process. He described cases that are very similar to Hansen’s, where children were removed from their homes. For instance, he described how a Scottish teenager who had been diagnosed with ME that became very severe, and how she was sent to a psychiatrist who diagnosed pervasive refusal syndrome. By the time he was called in to intervene she was in a psychiatric ward, curled up in a fetal position, being tube fed – and like Hansen, was highly sensitive to light and sound. The story ended happily with her being transferred to “a gentle nursing home” where she had a slow but steady recovery. However, “how you can change from having ME to having a purely psychiatric illness just because you have been handed from a pediatrician to a psychiatrist, I do not really understand,” he said.
“It is the medical profession’s duty to be able to make a confident, clear diagnosis of ME/CFS and if they do that, there should be protection. But many of the cases I have seen have not even been diagnosed.”
Dr Nigel Speight
Currently involved with about three cases in Britain, this British doctor is the best hope Hansen’s parents have had in the past year. His willingness to help rescue the young ME patient being held in a mental ward at the Danish Hammel Neuro Center Hospital has resulted in excitement on the part of the J4KH group which is headed by people who themselves suffer from ME and CFS. All the family wants is their little girl back.
Invest in ME’s Submission to the APPG for ME on 3rd February 2014
Questions from Invest in ME to Mike Penning, Minister of State for Disabled People Mike Penning
It is clear from many of our supporters that GPs are often known to refuse referrals for their ME patients on the grounds that there is little point in doing so as they believe there are no treatments.
This illustrates an ignorance of ME and of research into the disease (RCGP Chair Dr Clare Gerada stated at the IIMEC8 Invest in ME International ME Conference, in London in 2013, that GPs know little about ME).
This impacts the patient as well as compromises their entitlement to benefits.
Some of the clinics set up for ME and CFS specifically state:
“Please note that we do not accept referrals where the sole purpose is for second opinion for pending benefits claims.”
(- King’s College CFS Unit)
How are patients supposed to obtain medical evidence for their benefits applications if they are refused referrals and the few clinics set up to see these patients cannot provide appropriate support?
How are they supposed to get better if their personal physician is ignorant of the disease and refuses to facilitate the possibility of improved treatment?
This adds further stress for patients and their families and enforces again the view that ME patients are subject to systemic bias in the healthcare system and ignored by disabilities agencies.
Effectively ME patients are discriminated against.
The failure of government policy on ME for a generation means that few patients have decent healthcare or prognosis once they have the diagnosis of ME.
This makes the impact of ATOS and welfare reforms even harder than usual for ME patients as no one seems to take responsibility for this group of patients even though many acknowledge the shameful treatment these patients have received (in Norway the government officially apologised for their treatment of ME patients).
How is it possible then for Atos medical assessors to be able to give prognoses of ME patients' ability to return to work based on one interview and with no knowledge of the disease and no understanding of the effects of the disease and especially the consequences from post-exertional malaise?
It is obvious from patient experiences that ATOS are acting purely to enforce DWP policy to deny benefits - seemingly influenced by the outdated establishment bias which has been allowed to be built up by vested interests.
The role of the ministry is to improve the health and safety system, simplifying the welfare system and making sure work pays. Helping people to find and stay in work.
It is plainly obvious that these objectives are completely failing in being materialised for ME patients.
We would respectfully suggest that the minister consider the following in relation to the ministry’s objectives -
· The health and safety of patients has not been improved and continues to be so poor that severe deterioration and even deaths from ME are becoming more frequent.
· The welfare system for ME patients is a scandal - with little understanding of the disease being exhibited by DWP, or their contracted third-party organisations such as ATOS, and not even healthcare practitioners.
· Making sure work pays is a meaningless concept if people are denied any hope of development of treatments or cures for this disease due to lack of proper research being funded by those charged with that responsibility (such as the MRC).
The minister, we feel, should consider the deplorable state in which successive governments have left ME patients.
An entire section of the population is discriminated against on a regular basis - something a Minister for Disability Issues really ought to consider a major priority.
Welcome to IIMEC9 - the 9th Invest in ME International ME Conference 2014 in Westminster, London, UK, on 30th May 2014.
Today Invest in ME announce some of the speakers at the 2014 conference.
The key to resolving, treating and curing ME lies in biomedical research.
Healthcare staff need to be aware of the latest biomedical research into ME as well as the multiple symptoms exhibited by ME patients and of the possible treatments available and future research directions.
Benefits of attending Invest in ME 2014 Conference
o Increase your understanding of diagnosis, treatment and management of ME
o Explore current and future biomedical research into ME
o Assess the role of immunological markers in ME
o Learn about ongoing clinical trials using Rituximab to treat ME patients
o Learn about inflammation in the CNS and its contribution to neurological disease
o Learn about the function of the immune response in the gut
o Share and exchange ideas with the leading practitioners in the field
Who should attend?
IIMEC9 will be of interest to:
o Specialists in ME (CFS)
o GPs with an interest in ME (CFS)
o Palliative care nurses
o Occupational Therapists
o Specialists in pain management
o Specialists in care of the chronically ill
o Community nurses
o All trainees in these disciplines
o ME Support groups and charities
Conference fee includes:
Entrance to the conference, lunch & refreshments, full conference documentation and certificate of accreditation (for professionals).
Invest in ME are pleased to announce the following speakers at the conference -
Professor Jonathan Edwards
Emeritus Professor of Connective Tissue Medicine University College London (UCL), UK
Associate Professor Mady Hornig
Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA
Professor Sonya Marshall-Gradisnik
Associate Professor, Biochemistry, Griffith University, Australia
Professor Julia Newton
Clinical Professor of Ageing and Medicine, Institute for Ageing and Health, Newcastle University and Honorary Consultant Physician, Royal Victoria Infirmary, UK
Dr James Baraniuk
Professor of Medicine at Georgetown University Medical Centre, USA
Dr Ian Gibson
Former Dean of Biological Sciences, University of East Anglia
Additional speakers are expected to be announced shortly
As the Invest in ME initiated and funded research becomes underway at UEA (gut microbiome) and UCL (rituximab clinical trial) the conference will reflect the research being performed and focus on synergizing the research elements from around the world to find cause and provide treatments for this disease.
Also present at the conference will be representatives of the European ME Alliance (EMEA) as the EMEA AGM takes place after the conference.
CPD Accreditation from the Royal colleges has been applied for and we hope to obtain the maximum credits for the conference, as in previous years.
How can we ensure ME research and patient care benefit from the latest thinking in ME/CFS and related areas of research? What is the best way forward?
The Invest in ME conferences have attracted presenters and delegates from fifteen countries and our DVDs of the conferences have been distributed to over 20 countries in Europe, USA, Canada, Australia and New Zealand.
Full details of the conference can be found at this address - click here.
IiME are again offering a discounted rate for healthcare staff who attend in connection with a local ME Support Group. IiME welcome all professionals who are working with, or have an interest in, ME/CFS.
We look forward to welcoming you to the conference,
Invest in ME
Bristol ME Event - “Exercise and ME/CFS – the evidence”
I received the following from Natalie Boulton of “Voices from the Shadows”; the flyer mentioned in the text can be found here and a programme for the event here.
From Natalie -
I would like to let people know about an evening event in Bristol “Exercise and ME/CFS - the evidence" on Feb 5th which I am organising with the Bristol North Fibro & ME/CFS Support Group. Since some charities only wish to publicise their own events it is proving rather difficult to let relevant people know about this event. However, since people from far, far away have made bookings, I realise that many people do very much appreciate the opportunity this event provides, if they know about it.
The evening will include a short 30 min version of the film - the young ME patients' stories - backed up by a presentation by Prof Mark VanNess about the research from the Workwell Foundation with Staci Stevens and Chris Snell, previously at the Pacific Fatigue Lab California. This work is very significant in that it objectively demonstrates the reality of the cardinal symptom of ME - post exertional malaise, or the post exertional exacerbation of symptoms which can prove so damaging to patients. Their work counters assertions made by proponents of graded exercise and the PACE Trial that the fatigue and disability of CFS and ME is merely caused by deconditioning and that GET and CBT are the most effective treatment options for patients.
Dr Nigel Speight who speaks in the film will also explain some of the problems encountered by families and medical professionals when trying to help young patients.
I hope the event may be of interest to you and would be very glad of your help with letting other ME sufferers know about it. It is not only of relevance to patients, but will also be of use to relatives, carers and medical professionals. If you have any questions about it do please ask me.
With best wishes,
ME on TV
On the 4th December 2013, on “The People’s Voice” online TV channel, journalist Sonia Poulton interviewed Jane Colby (of the TYMES Trust) and Rebecca Hansen (of the ME Association in Denmark) about ME and, in particular, about the abuse of people with ME both in the UK and abroad. It centres on the case of a young lady in Denmark who has been removed from her home and is being held in hospital against her will and that of her family. It also includes details of why ME is not just “chronic fatigue”. The interview lasted around 20 minutes and is well worth listening to; it’s quite an eye-opener as to what is going on.
The interview is available to watch on YouTube – click here
Out of Hours
Chronic fatigue syndrome:
a patient’s perspective
In 1999 I contracted a throat infection that receded after many weeks, but I was still unbelievably exhausted with the most intense flu-like malaise. Two years later I was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and joined the 240,000-plus people in the UK with this Illness. I assumed that a diagnosis would lead to effective treatment, but I was in for a shock.
Initially my GP suggested I see a psychotherapist. It seemed a strange recommendation, but I trusted his judgement and decided to see if this would help. Unfortunately it had no impact at all on the illness. My GP then referred me to an endocrinologist who boldly announced that, as the test results were all normal, everything was fine and offered to prescribe antidepressants. I was deeply frustrated by the suggestion that clear test panels meant I should be treated as a depressed patient. I was not inclined to agree that antidepressants were the best treatment when my experience of the symptoms was closer to that of an infection than a mood disorder. In fact, I have been told a number of times that I’m simply depressed, or that I am de-conditioned and just need to exercise. I wouldn’t mind if either diagnosis were true, as there are effective treatments available, but they are inadequate explanations.
CFS/ME waxes and wanes but also causes post-exertional malaise: when patients go beyond their usual (restricted) activity level they suffer a worsening of symptoms which can be severe. Patients often refer to this as a crash. For me this can mean being bedridden for weeks with muscle weakness, dizziness, loss of appetite, and indescribable physical and mental exhaustion. It’s worth noting that my GP has only ever seen me when the symptoms are at the lesser end of the scale. During a crash I am too ill to leave my bed, let alone travel to the surgery.
When I first got sick, CFS/ME seemed to be largely treated as a mysterious psychological condition, with doctors encouraged to limit the number of tests done, and with patients left to self-manage. Since then things have improved a little in that there are fatigue clinics in some areas, but the overall treatment situation remains poor, with most patients receiving little or no effective treatment through the NHS.
The PACE trial is the largest study performed into CFS/ME treatments, primarily cognitive behavioural therapy (CBT) and graded exercise therapy (GET). I think the £5 million cost would have been better spent on immunological studies, exercise physiology testing, and understanding the disease mechanisms. A recently published PACE trial paper reported on ‘recovery’ rates.(1) However, the letters published in response to the paper show that the study’s post-hoc definition of ‘recovery’ was seriously flawed, and so much looser than the recovery criteria outlined in the trial’s protocol that the ‘recovery’ outcomes bear no relation to what an average person, or clinician, would define as recovery of health. PACE was an un-blinded study and the primary outcomes were all subjective self-report measures at risk of response bias. Changes from the trial protocol (2) also meant that it was easier for patients to be classed as improved, yet even then the addition of CBT and GET to specialist medical care led to only an extra 11-15% of patients reporting improvement.(3) This simply underscores the need for more research across all areas to find effective treatments.
CFS/ME presents difficulties for both patients and doctors, reinforcing the need for them to work together in partnership. A recent BMJ editorial (4) entitled Let the Patient Resolution Begin could not have said it better:
“… health care won’t get better until patients play a leading role in fixing it.”
Software engineer, London.
1. White PD. Goldsmth K. Johnson AL. et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial Psychol Med 2013 40»10»: 2Z27-223S.
2. White PD. Sharpe MC. Chalder. et al Protocol for the PACE trial: a randomised controlled trial of adaptive pacing. cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patents with the chronic fatigue syndrome / myalgic encephalomyelitis or encephalopathy BMC Neurol 2007; 7: 6
3. White PD. Goldsmith KA Johnson AL, et al. Comparison of adaptive: pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medcal care for chronic fatigue syndrome (PACE): a randomised trial Lancet 2011 377197681:823-836.
4. Richards T, Montori VM, Godlee F.et al Let the patent revolution begin BMJ 2013 346: f2614.
INCORRECT GOVERNMENT INFORMATION COULD BE HURTING CHRONIC FATIGUE SYNDROME PATIENTS, NEW RESEARCH FINDS
PRESS RELEASE: NEW YORK, NY (11/20/2013) – An untold number of New Yorkers, perhaps well over 100,000, who have been diagnosed with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (ME/CFS) could be at risk of relapsing and exacerbating their condition due to a course of a treatment suggested to them by the federal government, according to groundbreaking new research.
At a medical conference today sponsored by the New York ME and CFS Center at Mt. Sinai and held at the New York Academy of Medicine, researchers showed that a form of treatment called Graded Exercise Therapy (GET) which has been lauded by the UK’s National Institute of Clinical Excellence (NICE) and recommended by the U.S. Centers for Disease Control and Prevention (CDC) may not help ME/CFS, but actually can make it worse. Unfortunately, the CDC has long been touting that certain exercise regimens can help manage the disease, even offering guidance on their website.
Dr. Derek Enlander, Dr. Eric Schadt, Dr. Miriam Merad, Dr. Christian Becker and a team of researchers at Mt. Sinai Medical Center have discovered new research on ME/CFS that could change the way the disease is treated. Their research shows that the disease is tied to the immune system much more than originally thought. A recent study showed patients can actually relapse when they partake in excessive exercise, and other therapies maybe more effective.
“We want to raise awareness about this disease, how it affects the body and the best way to treat it,” Dr. Enlander said. “For too long, this disease has been misunderstood, leading to a poor quality of life for far too many patients. We hope to change all that.”
Myalgic Encephalomyelitis was first identified in the mid-1950s, by Dr. Melvin Ramsay of London’s Royal Free Hospital, after being suspected of outbreaks dating back at least two decades’ prior. What is thought to have been an outbreak in Nevada’s Incline Village in the mid-1980s, mirroring one in rural upstate New York’s Lyndonville, led to the CDC officially recognizing a condition reduced Chronic Fatigue Syndrome in 1988 following the elimination of the Epsten-Barr virus as a potential culprit. The CDC has displayed an inconsistent track record ever since, diverting millions of dollars earmarked for research in the disease to other causes in a scandal uncovered some 15 years ago. Recent estimates suggest that hundreds of thousands of people in the U.S. suffer from CFS, although the CDC is thought to have both underestimated the severity of the disease, while overestimating the numbers, as they have reported a disease prevalence of 2.54% in the U.S. This figure is not accepted by experts in the field. Using the more-accepted figure of 0.4% would estimate the number of sufferers in the New York City Metropolitan area alone at over a half million patients, the majority of whom are likely undiagnosed.
The illness which afflicts women to a greater degree than men, causes severe immunologic dysfunction, profound loss of energy (sometimes referred to as fatigue, though in many cases patients would report that this term is inadequate as a descriptor), sleep disorders, neurological disturbances, pain, and other symptoms. Underlying causes and treatments for CFS have been elusive, but new research is shedding light on how the disease works.
This document was produced by The Grace Charity for ME and is reproduced here with their kind permission. It can be found online as Word and PDF documents.
SAYING NO CAN BE POSITIVE Spring 2006 (updated 2013)
The following has been designed to support M.E. sufferers who choose to not attend the current NHS Chronic Fatigue Syndrome/Myalgic Encephalomyelitis clinics, set up across the country. These clinics have been based upon the Chief Medical Officer’s report from 2002 and consist mainly of psychological therapies such as Cognitive Behavioural Therapy and Graded Exercise Therapy. This document may also support M.E. patients who refuse to receive the treatments of CBT and GET recently recommended by NICE for CFS/M.E. and also by the PACE trials (Prof. Peter White et al.) Bedbound/housebound sufferers who are advised to have these therapies on domiciliary visits may also find this document helpful. It may also help those pressurised to undertake CBT and Graded Exercise Therapy by Private Health Insurers.
Those who wish to refuse psychological therapies for M.E. can be supported by the following facts:
1) The law protects patients from unwanted treatments if the patient is deemed to be mentally competent. Medical practitioners cannot give a treatment to a patient without the patient’s consent. 1 Scientifically, M.E. is NOT in Mental Health, see below.
2) An M.E. patient doesn’t have to comply with the recent NICE guidelines on CFS/M.E., supported by the above law, because M.E. is not scientifically in mental health.
3) The NICE guidelines, which support CBT and Graded Exercise Therapy for M.E., are not mandatory. In practice, GPs and all doctors do follow the NICE Guidelines: this is because all NHS organisations have a legal requirement to implement NICE guidance. However, the treatment aspect is not enforceable.
‘I can clarify that NHS organisations are indeed expected (and in some cases, such as a type of guidance called Technology Appraisal guidance, legally obliged) to implement NICE’s recommendations. This is not the same as saying that the NHS has the power to force a patient to undergo a treatment which they do not want.’ 2
‘NICE clinical guidelines such as CG53 are not legally enforceable.’ 3
4) M.E. patients have a right, under the NICE guidelines, to refuse the recommended treatments from NICE.
The following could be used to help M.E. sufferers who wish to refuse NICE’s recommendations of treatment:
‘Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.’ 4
A patient’s care plan can include state benefits and social services care, which are now also linked with the NICE guidelines.
The NICE guidelines do not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of each patient. Healthcare professionals should record their reasons for not following clinical guideline recommendations.
In other words, every patient case is individual and a doctor does have the right to express clinical freedom, along with consulting the patient, as to what is best. This may mean refusing Graded Exercise Therapy and CBT.
5) An M.E. patient who is in a comatose/semi comatose state cannot by law be forced into psychological treatment just because they have M.E. 5
6) Private Health Insurers cannot force an M.E. client to undergo unwanted treatment before making a payment, unless those treatments are specified in the contract. Unless the contract of a company states clearly that M.E. clients must undergo CBT and/or Graded Exercise Therapy before a payment is made, the company could well be in breach of contract. Also, every individual has freedom to express views as stated by The Human Rights Act 1998. If an insurance company ignores a client’s reasons for refusing CBT and/or Graded Exercise Therapy, a client could claim their ‘freedom of expression’ has been violated. 6 The following organisation may offer help, including a free telephone appointment for legal advice:
Disability Law Service
39-45 Cavell Street
Tel: 020 7791 9800
7) An M.E. patient cannot have their state benefits withdrawn for refusing CBT and Graded Exercise Therapy.
Unfortunately, the NICE guidelines are now linked with the awarding of state benefits and Social Services care.
U.K. law says that if a patient refuses suitable treatment without good cause, benefits can be withdrawn. 7
However, CBT and Graded Exercise Therapy could be argued as unsuitable treatments for M.E. sufferers (see facts below). Scientific opinion which is against CBT and GET for M.E. can be used to obtain state benefits for sufferers.
In addition, NICE has written the following in its CFS/ME Guidelines:
‘Healthcare professionals should be aware that – like all people receiving care in the NHS – people with CFS/ME have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of their care, or future choices about care.’ (This is also quoted in section number 4 of this paper. See Footnote 4 for reference.)
Although NICE Guidelines are now linked in with the awarding of Social Services care and State Benefits, the above quote can be used in favour of an M.E. sufferer’s refusal to undergo CBT and Graded Exercise Therapy.
If sufferers find themselves in a legal battle with their benefits, those who qualify for legal aid may find the following organisation helpful:
Civil Legal Advice (formerly Community Legal Advice) Tel: 0845 3454345
8) M.E. is a neurological disorder. It has been classified as such by the World Health Organisation in the International Classification of Diseases since 1969. 8 Therefore psychological therapies could well be inappropriate.
9) M.E. has a strong medical history of being an organic disease. Dr. Gordon Parish is the curator of the Ramsey Archive, which is possibly the world’s largest collection of medical papers on M.E. 9 It includes detailed world-wide epidemics of M.E. since 1934 and the viruses which triggered the disease.
10) There are over 2,000 papers showing that M.E. is an organic disorder, according to Prof. Anthony Komaroff (Professor of Medicine at Harvard). 10
11) In November 2010, M.E. sufferers were banned from giving blood. NHS Blood and Transplant has said that the ban is a precaution to protect the donor’s safety by ensuring the condition of M.E. is not made worse by donating blood. They say that the move brings M.E. in line with other relapsing conditions such as Multiple Sclerosis and Parkinson’s Disease. 11 However, many people in the M.E. community feel that the ban is over the possibility of contamination from the virus XMRV, which has been shown in studies to be high in M.E. patients. (See research by The Whittemore Peterson Institute team, published in the journal Science 2009.)
12) Many tests exist in aiding a diagnosis for M.E. Therefore, using psychological therapies for ‘unexplained fatigue’ is inappropriate. Although diagnostic tests for M.E. are still being worked upon with promise, nevertheless many tests and procedures can be administered in aiding a diagnosis of M.E. These include the use of SPECT, MRI and PET scans, test for NK cell activity and endocrine abnormalities, Tilt Table Test, viral tests and many more. 12 Although these tests are rarely offered by the NHS for M.E., they have nevertheless shown evidence of physical abnormalities.
13) “Patients who improve after physical exercise programmes do not have M.E./CFS.,” says Dr. Byron Hyde, M.D. of the Nightingale Research Foundation for M.E. in Canada, who has studied M.E. since 1984. 13 Dr. Hyde stresses that M.E. is primarily a disease of the Central Nervous System. 14
14) Patients who respond well to CBT and Graded Exercise Therapy might not have M.E. due to the diverse criteria used. Some criteria focus on unexplained chronic fatigue only, omitting symptoms showing central nervous system involvement. There are at least twelve definitions of Chronic Fatigue Syndrome and/or M.E., all of them different. 15 In the U.K., a frequently used case definition is the Oxford Criteria which includes patients with no physical signs and selects subgroups of patients with high levels of psychiatric diagnoses . 16 The PACE and FINE trials (funded by the Medical Research Council) use the Oxford Criteria. 17
15) The assumption that an M.E. patient can always do more is an erroneous one. There are overwhelming international research findings on M.E., which support multi-system involvement particularly of the immune, endocrine, cardiovascular and neurological systems. 18 Also, there is evidence indicating pathology of the central nervous system and immune system 19 and evidence of metabolic dysfunction in the exercising muscle. 20 Also, Dr. Jay Goldstein has demonstrated through SPECT scans the severely decreased brain perfusion of an M.E. patient 24 hours after physical exercise. 21 The Canadian Criteria (2003) states that the worsening of symptoms after exertion is a principal symptom of M.E. 22 Raised levels of noxious by-products of abnormal cell membrane metabolism, associated with exercise and correlating with patients’ symptoms have been demonstrated. 23
16) CBT and Graded Exercise Therapy can worsen M.E. symptoms. In a survey of 3074 M.E./CFS patients conducted between 1998 – 2001, 55% of patients said that CBT had made no difference to their illness, whilst 22% said CBT had made their illness worse. 16% of patients said that graded exercise had made no difference to their illness whilst 48% said it had made their illness worse. 24 A survey by the 25% ME Group (for severe sufferers) of 437 patients, demonstrated that of the 39% of group members who had used graded exercise, 95% had found this therapy unhelpful, whilst 82% reported their condition had been made worse by graded exercise. Some patients were not severely ill with M.E. until after graded exercise. In the same survey 93% of those who had undergone Cognitive Behavioural Therapy had found it unhelpful. 25
17) The CMO’s Report recommended CBT and Graded Exercise Therapy despite the objection of two patient support groups. The patient support groups of BRAME (Blue Ribbon for the Awareness of ME) and the 25% ME Group refused to endorse the CMO’s Report of 2002 based on its recommended treatments of CBT and graded exercise. These support groups mainly represent the needs of severe M.E. sufferers and were part of the CMO’s Working Group.
18) Medical Concerns have been raised about the CMO’s Report. The Journal of Chronic Fatigue Syndrome, mentions criticism by health professionals and the public of both the British and the Australian M.E./CFS guidelines. “These criticisms included claims of bias in the recommendations toward a psychiatric outcome and failure to understand the limitations of patients to perform exercise programs as well as many others.” 26
19) The NICE guidelines have received widespread condemnation. The recent NICE guidelines were NOT supported by the following registered U.K. M.E. charities: The M.E. Association, the 25%M.E. Group, Invest in M.E., and the Grace Charity for M.E. Also, the organisation BRAME did not support the guidelines outcome, despite the latter serving on the panel. There are many other M.E. groups who also condemn these guidelines. The NICE guidelines received so much criticism that NICE were taken to court by two M.E. sufferers in February 2009. Views from international researchers (e.g. Carruthers, Peterson, Lerner, Hooper and Drs involved with M.E. Research UK) regarding the potential negative effects of Graded Exercise Therapy and CBT, were not acknowledged in the Judge’s decision.
Also, the NICE guidelines group had no-one offering a biomedical aetiology (cause) of M.E: therefore, the disease M.E. was never properly addressed by NICE because researchers offering a biomedical cause were not allowed to serve on the guideline group.
‘’Most Independent M.E. charities and patient organisations have rejected the NICE guidelines...” 27
20) The PACE trials results in February 2011, promoting CBT, Graded Exercise Therapy and APT (Adaptive Pacing Therapy, a form of Graded Exercise) have also received widespread condemnation from M.E. patient groups and medical researchers. 28
21) The International Consensus Primer for Medical Practitioners 2012, states that PENE is a required symptom for a diagnosis of M.E. (Post-Exertional Neuroimmune Exhaustion).
‘PENE is characterised by a pathological low threshold of physical and mental fatigability, exhaustion, pain and an abnormal exacerbation of symptoms in response to exertion. It is followed by a prolonged recovery period. Fatigue and pain are part of the body’s global protection response and are indispensable bioalarms that alert patients to modify their activities in order to prevent further damage.’
The authors of the panel consist of twelve countries. 29
1 See the case of St.George’s Healthcare NHS Trust v S (1998) 3 All ER 673 (Court of Appeal), p.758 of Hepple, Howarth and Matthews Tort, Cases and Materials, 5th Edition by DR Howarth and JA O’Sullivan, ISBN 0 406 063265 (Butterworths, 2000)
2 Quote from Kathleen Jackson-Heppell, Communications Co-ordinator (Enquiry Handling and Internal Communications for NICE), in an email to the Grace Charity for M.E. dated 15/02/2011
3 Quote from Natalie Whelan, Communications Executive (Enquiry Handling) for NICE, in a letter to the Grace Charity for M.E. dated 23rd September 2009.
5 See above publication in endnote 1 (Hepple, Howarth and Matthews Tort) regarding section attributed to Lord Brandon of Oakbrook, pp.744, 745
6 The Human Rights Act 1998, European Convention for the Protection of Human Rights and Fundamental Freedoms, Section 1, Article 10, no.1
7 U.K. law on state benefits, Regulation 18 Social Security (Incapacity For Work) Regulations. A similar law applies to other state benefits for sickness and disability.
8 World Health Organisation - International Classification of Diseases 10-G93.3
9 What is ME? What is CFS? Information For Clinicians and Lawyers, Dec. 2001, Marshall, Williams, Hooper, page 11. Available from Prof. Malcolm Hooper, Dept.of Life Sciences, University of Sunderland SR2 7EE. Also, see www.meactionuk.org.uk
10 See the paper ‘Illustrations of Clinical Observations and International Research Findings from 1955 – 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ by Hooper, Marshall, Williams, 2005, page 6. See also www.meactionuk.org.uk
11 See report from BBC NEWS HEALTH, October 8 2010, ME patients face UK ban on donating blood by Michelle Roberts. www.bbc.co.uk/news/health
12 Leaflet A Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, The Nightingale Research Foundation, Vol.1, Issue 7, revised, 1992, page 17. Also, Journal of Chronic Fatigue Syndrome Vol . II, No.1, 2003, Canadian Criteria, page 25, The Haworth Press Inc.
13 Ibid., A Physician’s Guide to Myalgic Encephalomyelitis Chronic Fatigue Syndrome, page 25
14 Clinical Observations of Central Nervous System Dysfunction in Post-Infectious, Acute Onset M.E/CFS, page 38, The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.
15 Report from the National Task Force on Chronic Fatigue Syndrome, Westcare, Bristol 1994. This states nine definitions: the recent Canadian definition in 2003 makes ten; the Reeves definition (2005) makes eleven and the International Consensus Primer (2012) makes twelve.
16 Katon & Russo, 1992; Freiberg, 1999, Unhelpful Counsel? MERGE’s response to the CMO report on CFS/ME, 2002, p15.
17 See the website of the Medical Research Council at www.mrc.ac.uk
18 ME and/or CFS paper, September 2001, page 1, V.A. Spence PhD, Chairman of MERGE (ME Research Group for Education and Support). MERGE has become MERUK since this publication (ME Research UK.) This paper quotes from several published findings. Available from MERUK, The Gateway, North Methven Street, Perth PH1 5PP. Also, see www.meresearch.org.uk
19 The Biology of the Chronic Fatigue Syndrome, Prof. Anthony Komaroff, The American Journal of Medicine 2000: 108: 99-105.
20 Mitochrondrial abnormalities in the postviral fatigue syndrome, Behan, W.M.H. et al., Acta Neuropathologica 83, 1991, pages 61-65.
21 The Negative Effects of Exercise on an M.E./CFS Dysfunctional Brain, page vii, The Clinical and Scientific Basis of Myalgic Encephalomyelitis Chronic Fatigue Syndrome 1992, Byron Marshall Hyde, M.D., The Nightingale Research Foundation.
22 Journal of Chronic Fatigue Syndrome Vol. 11, No.1, 2003, Canadian Criteria, page 22, The Haworth Press Inc.
23 Oxidative stress levels are raised in Chronic Fatigue Syndrome and are associated with clinical symptoms, Kennedy, Spence, Belch, Free Radical Biology & Medicine 2005:39:584-589
24 Directly from the Horses’ Mouths, Doris M. Jones MSc, Reference Group Member, CMO’s Working Group. This survey was part of the Working Group on ME/CFS set up by the Chief Medical Officer Sir Kenneth Calman in 1998.