Dear Mr. Burstow, it is time for proper ME research and treatment

Andie Pring:

"Dear Mr. Burstow,

Following your recent speech in parliament as part of the ME adjournment debate, we would like to address several issues that arose.

The first point is a point of accuracy, which we believe was also picked up by the Countess of Mar and Dr. Shepherd who both attended the debate, and which you now concede was an error on your part. You said:

“The Department does follow, and will continue to follow for the time being, the World Health Organisation convention in how we describe and refer to the condition-that is, to call it CFS/ME. That is the WHO definition; it is not a specific term that the Department of Health has alighted on and no one else uses. It is important that that be understood.”

This point is incorrect. "CFS/ME" does not exist according to the WHO. ME (as benign myalgic encephalomyelitis) is listed in the neurological conditions' section under G93.3 post-viral fatigue syndrome. This is extremely important for two reasons. It confirms that 1) ME is a neurological condition and 2) that the illness has an infectious onset. CFS is listed in the index where it points the reader to G93.3. Other illnesses that sound similar to "CFS" are listed separately in ICD-10; 'Neurasthenia' and 'Fatigue syndrome', both at F48.0, and 'Malaise and fatigue' at R53. Perhaps patients seem pedantic in repeatedly stating this fact, but this is where the waters have been muddied and research has become a farcical mess. Many, so called, expert ME doctors (some of whom are worryingly on the MRC panel) are simply studying fatigued people and applying their findings to ME sufferers with extremely damaging effects.
Sadly, as very few people are given the necessary tests in the UK to clarify whether they are suffering with neurological ME, the vast majority are given the label ‘CFS’ along with a nod from NICE to withhold further testing and treatment. After being 'labelled' incorrectly, patients are then offered inadequate treatment protocols such as a) antidepressants (only a small proportion of sufferers become depressed and this is usually in response to continued suffering from loss of health, loss of career with subsequent loss of income, loss of education, loss of home, loss of support, and continued ignorance from government officials, doctors, media and the public in general), b) pain killers and C) talk and graded exercise therapy (which can cause serious health repercussions to those patients with compromised hearts and circulatory systems (approximately 1/3 of sufferers)). Many patients are seriously ill and yet they are denied necessary testing and treatment. Consider what happens to a cancer or AIDS sufferer if left untreated? Would you suppose it ethical to deny them treatment? ME sufferers DO die from the condition, at least they die from complications arising from the condition (as is the case with AIDS). A diagnosis of CFS will always be a misdiagnosis and a diagnosis that results in the cessation of necessary testing and withholding of vital treatment. This is deeply unethical.

Worryingly, you do not appear to appreciate the level of ignorance surrounding ME that is found within the medical profession. It is not possible for patient groups to work with the NHS, nor for patients to expect their doctors to come up with individual treatment programmes, when so many false assumptions are made about the illness (and therefore the patient) in the first place.

This observation of ignorance within the NHS is one that others have also made. The charity Invest in ME is currently trying to set up a research facility in East Anglia and has found it very difficult, despite the fact that some resources are in place e.g. the PCT have agreed to fund examinations. Many consultants admit they don't believe in the diagnosis of ME, even though they are happy to hand the diagnosis out. This is tantamount to misdiagnosis and shows an urgent need for education of healthcare staff about the condition. The government may recognise ME as a neurological condition but most doctors certainly do not. If they did, ME patients would be routinely referred to a neurologist which does not often happen, and when it does the neurologist refers them to an occupational therapist to be treated for "fatigue".

The latest research is showing evidence of persistent viral infection in sufferers and last week's big findings by the University of Medicine and Dentistry of New Jersey, in which over 700 unique proteins were identified in the spinal fluid of ME patients, seems to have escaped the media in the UK due to the frenzy over the widely-discredited PACE Trial. We would do well to pay close attention to this cerebrospinal fluid work (in addition to the research on XMRV) as it validates previous studies carried out in this area and gives tangible proof that something is happening in the neurological system of those afflicted.

The current system is failing sufferers and things will not change until these sorts of findings are integrated into GP care programmes. Government acceptance is one thing, but it needs to be carried through to the patient. There are currently over 4,000 published papers that indicate the biological nature of ME. How many more times do these papers need validating before the findings are used to provide effective treatments?

You state that it is not the job of the government to dictate how the MRC spends its money. In some situations this might be true, but in the case of ME research, where so much money has been wasted on pointless psychiatric studies, something needs to be done. If ME is considered a neurological illness then why do psychiatrists sit on the panel that decides which projects get funded? They are simply not qualified to understand what makes a good research proposal for neurological ME. Where are the neurologists, immunologists, virologists and knowledgeable physicians?

Whilst we welcome the new funding from the MRC, the areas highlighted for research are not specific enough. How can we ensure that the money is going to go to the right people?

The research money must be awarded to those who use a properly defined cohort. Studies that exclude patients with neurological signs, autonomic system dysfunction, post exertional malaise and immune dysregulation (as in the recent PACE Trial) are excluding those who suffer with neurological ME, the exact people they then say they are studying. These erroneous findings are then anticipated to work on the entire community of sufferers. In view of this, is it any wonder, that the interventions recommended by the PACE Trial worked on some patients? CFS is a misdiagnosis and cohorts will have any number of illnesses from burn out, fatigue, depression, adrenal or thyroid disease to lupus or Lyme disease. Studies should, therefore, be carried out on the most severely affected people. These people must have ME and not just chronic fatigue. Some experts have suggested that ME or rather "CFS" (which some doctors wrongly believe to be the same thing, but which is in fact a diagnosis reached after testing is prematurely halted) is being overdiagnosed. This seems likely given the ease with which doctors hand out the diagnosis. The Canadian Criteria should be used for diagnosis and only those who meet it should be studied. This is one reason why research should not be done on patients at the CFS/ME clinics that are set up around the country. Many people who go there are only suffering from fatigue and the most severely affected will not be able to attend the clinics for practical reasons.

One of the best things that the government could do (perhaps APPG could help here?) would be to find some money to fund a campaign that informs doctors and medical schools about what ME really is and how severely it affects people. What is to be gained by the government's recognition of ME as a neurological condition, if the NHS, benefits agencies and medical insurance companies do not also accept this classification? We believe there are many reasons for this ignorance but if we could counter some of the misinformation, patients at least may receive a less hostile reception when they do seek help.

Yours sincerely,

Andrea Pring (Devon; sick for 6 years)
Emily Richards (Dorset, sick for 2 years)

Below is a selection of quotes sent to us for inclusion in this letter:

Diagnostic Criteria

“As there MAY be with any long term chronic illness and especially as ours is fraught with such medical ignorance, neglect, and abuse, leading to all the social and economic factors too, social exclusion, loss of income, difficulty obtaining benefits etc. Psychological SYMPTOMS should be excluded from DIAGNOSTIC criteria and hence even more need for disease biomarkers to be agreed. Oxford criteria must be scrapped” Jo Best, London; sick for 19 years

“Until the current diagnostic criteria for CFS is either scrapped or used only to define those with idiopathic chronic fatigue and a specific, strict criteria for those with genuine ME be applied, such as the Canadian Criteria, then the diagnosis and subsequent research will be skewed. The Canadian Criteria was not intended for diagnosis but it fits the serious nature of the disease and excludes more patients that don't have autonomic, central nervous system and immune system involvement. Until the diagnostic criteria issue is dealt with, there will always be problems with the current system and high patient complaints. The Canadian Criteria should be rolled out for diagnosis and research in the UK. The differences between those with neuro-immune disease, ME and CFS will then become clear.” Christine White, Lancaster;
sick for 8 years

Mental Health Label

“We do not have a problem with a mental health label if we have mental health problems. We're angry at the label being attached to us because ME is not a mental health problem. How would you feel if you had a diagnosis of AIDS or cancer and were referred to mental health services - no chemo and no anti-retrovirals?” Sarah Lawry, Glasgow, Scotland; sick for 17 years

“Chronic fatigue is known as part of the clinical picture PTSD, depression and some other mental health conditions. We have no problem being labelled mentally ill, if psychological factors were a causation in ME.” Susan Rogers, Beckenham, Kent; sick for 2 years

“One of the most compelling sources of hostility between patients and doctors is the hypothesis proposed in the "Lancet" by Wessely and Sharpe in 1999, that CFS/ME is a psychiatric condition, characterised by a history of emotional disorder and childhood abuse. (33 Wessely, C Nimnuan, M Sharpe, Functional somatic syndromes: one or many? Lancet 1999; 354: 936-39, 11 September 1999).

Given that Sharpe’s patients were part of the study which NICE based their evidence on for developing Guideline 53 is it any wonder patients are angry?” Gabi Jacobs, Sussex; sick for 2 years

“Is he aware that, unlike other illnesses for which CBT is used as an adjunct, CBT as applied to ME is the central treatment? And can he assure us that anyone undertaking a course of CBT at a CFS Clinic is not then labelled as being mentally unwell. As others have mentioned, I wouldn't be kicking against a diagnosis of depression for example, if I were depressed. He's misinterpreting our reaction against being labelled mentally ill, it's not that we are rejecting the stigma of mental ill health, it's that we are rejecting the label of mental ill health because it is not a symptom of ME. Which is not to say someone with ME won't get depressed at some point down the road - having a disabling illness that robs you of your life etc would be enough to make the hardiest of souls feel blue. But it's the least of our worries - help us with the other stuff and depression is far less likely to arise as a reaction to the neglect.” Sue Howley, London, sick for 3 years

The MRC

Why can't the government put pressure onto the MRC? After all, isn’t the funding for research allocated from the government? Susan Rogers, Beckenham, Kent; sick for 2 years

“The government will not take responsibility for whatever research the MRC decide to spend taxpayer money on. This is unacceptable. They (MRC) must be held accountable for wasting taxpayers money on psychological/psychosomatic research into ME. Where has all the psychiatric research benefited the ME community? Oh yes, clinics set up by the dept of Mental Health to give us CBT and GET. Wonderful!” Paul Dacre, Buckinghamshire; sick for 9 years

The Involvement of Psychiatrists

“What value is there in having so many psychiatrists/psychologists on the MRC group who will determine which research proposals get a share of the 1.5 million.” Sue Howley, London; sick for 3 years

“We know there have been very good research proposals but the heavily laden psychiatric committee embargoes them. Why do psychiatrists have to be involved at all?” Rosie Cox, Cardiff; sick for 41 years

NICE Guidelines

“The NICE guidelines fail to address this complex neurological condition.” Anne Robertson, Dunfermline; sick for 2 years

“You are wrong to say that the NICE Guideline is only a suggestion of treatment as we all know our GPs refuse to countenance anything which isn't advised by NICE for fear of reprisal.” Rosie Cox, Cardiff; sick for 41 years

“What I really want to know is why, when I've had tests on my blood which have found serious anomalies, my GP just raises his hands in the air and does nothing? Is it because I paid to have it done privately? Does that make the results null and void? I can't afford to continue to go to private doctors.” Caro Retallick, Anglesey; sick for 19 years

Personalised Care Plans

“I'm intrigued about this concept of personalised care plans. I'd like Mr. Burstow to get in touch with my GP and explain what this means, what their duty of care is towards me. Both GPs at my local practise told me at the onset that they believed CFS (that was my diagnosis) to be 'a real disease with a psychological component'. The only thing they did for me apart from the usual blood work was to refer me to Kings CFS Clinic (who use CFS & ME interchangeably, as if they were the same thing), despite the fact I'd already tried CBT. If we're free to decline an invitation to CBT, what other 'treatments' does Mr. Burstow believe to be available to us because my local Surgery could do with that information? My GP has no idea how much or how little progress I've made and shows no interest." Susan Rogers, Beckenham, Kent; sick for 2 years

"The only treatment my GP could offer was the psychological treatment at the local ME clinic. When I asked for prescriptions for some of the supplements that are recommended, I was refused. How can GPs facilitate personalised plans when their knowledge is based on NICE guidelines or psychological material? There cannot be any patient choice until the medical profession and social care accept that it is a neurological condition. Fragmented and inadequate NHS services will remain as there is no real commitment by some.” Susan Rogers, Beckenham, Kent; sick for 2 years

"Many neurologists either do not accept ME as a neurological condition and/or are poorly informed and usually follow, like GPs, the NICE guidelines. The same point applies to GPs. How can GPs develop personalised plans with us, when they have the same attitudes as neurologists?" Susan Rogers, Beckenham, Kent; sick for 2 years

Neurological Alliance

“It seems to be to be a cross between a glorified directory and a quango. I'd like to know exactly how engaging with that is supposed to help us?” Rosie Cox, Cardiff; sick for 41 years

“The Neurological Alliance is our friend? Neurologists consider ME or CFS to be a psychiatric diagnosis. When I got unwell, the only specialist I was referred to was a neurologist who went on to refer me to Alastair Santhouse of Kings. I got diagnosed and the only option I was given was for a course of CBT. I went in good faith but it didn't help. I'm still unwell, no surprises there.” Sue Howley, London; sick for 3 years

Patient Experience

“I have worked for 40 years, paid taxes for 40 years and paid NI for 40 years. I have been on DLA for 6 years and if I were still able to work I would still be on £40,000 pa and have a company car instead of a Motorbility car. I would travel the country using my first class rail warrant and stay in 4* hotels using my generous expense account. I had dignity, self belief, respect and I loved my job. However, it would seem that one day I decided to become disabled, poverty stricken and treated like a criminal. As a life style choice it was a disaster! Now it seems I am guilty of attempted fraud, worthless, a burden on society and a waste of space. Does anybody really believe that I prefer my life now? Drug addicts, while also needing help, are treated with more compassion and they made an informed choice to start using. I did not choose to be this way and I expect to be given as much support.” Derek Benyon, Leicestershire; sick for 7 years

“According to the BMA, ‘The right to the highest attainable standard of physical & mental health is a fundamental human right, protected by International Law.’ Are UK citizens to believe we obtain the highest standard of health for patients with ME, classified by the WHO since 1969 as a Neurological Illness, by abandoning them to the mercy of biased Psychiatrists who psychologise ME & declare without evidence or justification that ME Sufferers are ‘Malingerers’ & ‘The Undeserving Sick of our society’. Are these Doctors exempt from the first tenet of medicine, ‘First Do No Harm’? What of our Government, apparently theirs is ‘The obligation to protect’ as such there is ‘a duty of the state to prevent violations of the right to health by others.’ Why is the UK Government failing in its duty to protect ME Patients health from these violations? In fact they are complicit by allowing the unconscionable denigration of such Doctors to perpetrate serious iatrogenic harm on patients! In light of the BMA’s ‘Right To Health’, why do the Medical Establishment & the Government continue to ignore the thousands of International Research papers demonstrating that ME is a serious biomedical illness, recently linked to a Retrovirus? Why is the UK Government letting biased rhetoric & vested interests control Public Health Policy, MRC research funding & the media via the Science Media Centre,in the process discriminating against the neurologically ill? In doing so the Government is neglecting its legal obligation & its moral duty, flouting both in favour of the flawed ideology of Doctors to whom the best advice one can give is ‘Physician, heal thyself! The UK is fast becoming an International laughing stock over this situation, it is a Human Rights Travesty & our country deserves better!” Geraldine Hannaway, Glasgow; sick for 28 years

“I am sick and tired of ME/CFS being referred to as a hidden illness when so many people who have this are visibly ill and/or disabled. I have had ME for 8 years now and at the worst I was bed bound for 9 weeks then confined to a wheelchair for 5 years, I am now able to walk slightly but due to muscle fatigue and excruciating pain I either use a 4 wheeled walker or a electric wheelchair. When will we get some understanding for what those with ME/CFS have to go through, not just on a daily basis but an hourly basis, and when will people start believing that this is physical? Many studies have proved that this is physical, so when will GP’s Consultants and the Government get a grip, and begin to help us affected have a life?” Gemma Richards, Ipswich, Suffolk; 29 years old, sick for 8 1/2 years

“I had told Dr. Alexis Shelekov that each nerve in my body felt like it had been braided, and then sunburned, and then BEATEN with a piece of rubber hose to within an inch of my life. and Dr. Shelekov seemed a bit stunned, and said that in other outbreaks of M.E. around the world that he had studied in the 1950's and 1960's that patients were quite ill, but not in THIS much pain. And Dr. Marc Loveless was sitting next to us at this big table at lunch, and he said, "No, Dr. Shelekov, this man is telling you the truth. As, the senior MD in the state of Oregon for public health care, I have treated more than 2500 AIDS and ME/CFS patients in the past 12 years and by FAR, my ME/CFS patients are MORE sick and MORE disabled every single day of their lives, than my AIDS patients are, up until the final two months of life!" (Dr. Mark Loveless in 1992) Thomas Hennessy, Florida, US; sick 24 years (became ill whilst living close to Lake Tahoe, Nevada - where the first US outbreak occurred)

Change Needed

“We are at a turning point that will be remembered in history. Now, it's more clear than ever that there are physical processes causing this disease. The future will look back to this moment and see how it divided those who clung to an outdated, incorrect model from those who took a clear look at the science and made the logical decision to support physiological research, bringing about, at long last, effective treatment.” Kassy Fatooh, Benton, California; sick for 3 years and 9 months - mother of two kids who have also been ill for the same length of time"