Myalgic Encephalomyelitis ~ A very controversial Illness
A Personal view by Peter Ruberry (Committee Member Shropshire ME Group) December 2010
In 1987 I was forced to retire early from my job as agricultural lecturer, which I loved, due to contracting ME.
This name literally means Muscle pain with inflammation of brain and spinal cord.
ME has been classified as a Neurological Disease by Wold Health Organisation (in G93.3) since 1969
It has been known by the medical profession as Chronic Fatigue Syndrome (CFS) since 1988. This trivializes the illness and puts emphasis on one of its least important symptoms.
This is a tale of suffering and years of ignorance and abuse by some sections of the medical profession.
People with ME (PwME) would like to know - What is so secret about ME/CFS that both the MRC and the DWP feel the need to lock away documents relating to this illness until 2072?
IT IS NOT A TRIVIAL ILLNESS
Nancy Klimas, one of the world's top AIDS and ME/CFS physicians; Professor of Medicine and Immunology, University of Miami
"I hope you are not saying that (ME)CFS patients are not as ill as HIV patients.
I split my clinical time between the two illnesses, and I can tell you that if I had to choose between the two illnesses I would rather have HIV"
Hillary Johnson USA advocate for ME sufferers for many years
It's hard to imagine a general patient population
that has suffered more horribly than the English, given the remarkable sway of
a handful of British psychiatrists, such as Simon Wessely, who dominate and
even define the field there.
Who are affected?
250,000 sufferers in UK - 4 per 1000 of population (About 1500 in Shropshire)
25,000 children. (About 150 in Shropshire)
25% are severely affected – Housebound or bedbound, needing 24 hour care, tube feeding, in darkened, sound-proofed rooms in worst cases.
It affects all economic and ethnic groups and at any age, from 2 years upwards. Most commonly starts in 30s and 40s and in children around puberty Female:Male 3:1 (1:1 pre puberty).
What’s it like to live with?
Like severe flu combined with a severe hangover which persists for months/years but fluctuates in intensity hour to hour, day to day. It is worse after physical or mental activity. RELAPSES or setbacks are often DELAYED up to 72 hours after the activity.
Aching all over,
Poor concentration, Difficult to hold a conversation, find the right words or even finish a sentence
Heavy limbs - feels like lead running through your veins.
Circulatory impairment with facial pallor (the 'most striking finding'),
extremities and hypersensitivity to climatic changes in temperature.
Sore throats and extreme THIRST but Intolerance to ALCOHOL
Most are affected by light and noise – so hospitals are the worst environment.
Experts have found
- Reduced blood flow to the brain
- Reduced circulating blood volume
- In ME the DNA includes an ‘infection gene’ which triggers an immune response to a virus, causing us to feel muscle pain, fatigue etc., but then fails to switch itself off,
· Greater energy expenditure for any particular task
· Lower pain threshold.
· Abnormal cellular activity and signals from brain
· Oxidative stress and cytokine response.
· the mean QOL (quality of life) scores as regards limitations on physical functioning were very, very low, similar to those found in people with AIDS and multiple sclerosis"
“...there are now over 4,000 published studies that show underlying biomedical
abnormalities in patients with this illness. It’s not an illness that people can simply imagine that they have and it’s not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over”
Abuse of the Patient
M.E. patients are one of the most abused patient groups in the world and have been for years, because large sections of the medical profession have long been under the misapprehension that it’s a mostly psychological illness, or rather, an “illness belief”. There are numerous true stories of children with M.E. being seized from their families and abused in hospital, of parents being accused of causing or perpetuating their illness, of sexual abuse, of people being sectioned when they refused particular types of treatment
In the UK, the establishment psychiatric Lobby has become known as “The Wessely School”, after leading proponent Professor Simon Wessely of the Institute of Psychiatry in London. (He is now Government advisor on Gulf War Syndrome and has declared GWS to be MASS HYSTERIA)
In spite of thousands of biomedical studies to the contrary Wessely famously asserted that
“ME is simply a belief, the belief that one has an illness called ME”
Peter Denton White Head of Barts Hospital CFS/ME clinic says
'Remove the barriers to recovery
- tell Family and friend and work colleagues not to help.
- Do not give them any aids like wheelchairs etc so they can get out of the house occasionally.
- Get rid of all the Drs from the CFS clinics who believe in a physical cause.
- Ban doctors who practice medicine where they believe there is a physical cause
- finally as they are doing now stop their sick benefit after one year
This school of thought also
advocates that pwME should avoid joining ME Support Groups as this will only
perpetuate misguided illness beliefs and prolong the illness.
Why are we treated so badly?
Due to lack of research on the physical aspects of ME (Although £millions of government/MRC money has been spent on psychiatric aspects) there are no definitive tests or effective treatments.
Poor GP training – Many believe it’s psychological, rare and only lasts up to 2 years.
The wide range of symptoms – causes misdiagnosis – Depression, Fibromyalgia, MS. Polio, Postpolio syndrome, Lyme disease, Thyroid and adrenal problems, etc.
Most often patients are referred to a psychiatrist/treated with antidepressants which most of us cannot tolerate.
History of the Illness Disease of 1000 names – (David Bell book)
Sporadic outbreaks worldwide from 1930s – often in small, closed communities- schools, hospitals, convents, military bases, etc.
Known as Summer Grippe, summer flu, Lake Tahoe Disease, Tapanui Flu, Iceland Disease 1948, Royal Free Disease. In USA it became known as CHRONIC FATIGUE and IMMUNE DYSFUNCTION DISEASE (CFIDS) but they have recently voted to adopt the name ME!
Numbers affected increased exponentially after polio vaccination in 50s (Salk) and 60s (Sabine). Was originally called a-typical or abortive Polio.
Iceland disease indicated a polio link. In 1948 an outbreak occurred in Akureyri. The following year Paralytic Poliomyelitis occurred throughout Iceland but did not affect those who got ME the previous year.
Dr Melvin Ramsay 1955 “ME/PVFS The Saga of the Royal Free Hospital”
induced muscle fatigability with a prolonged recovery period - the 'sheet
anchor' of the ME diagnosis. NB: muscle pain is not required by Ramsay.
2 Circulatory impairment with facial pallor (the 'most striking finding'), cold extremities and hypersensitivity to climatic change.
3 Cerebral dysfunction affecting concentration and memory, word finding abilities, sleep rhythm, thermoregulation (sweating episodes in particular) and autonomic function (e.g. orthostatic tachycardia).
4 Variability and fluctuation of symptoms throughout the day.
Early British research, linked the illness to enteroviruses. There are 70+ viruses including Echo and Coxsacki viruses (rampant in 1980s) and 3 polio viruses, which enter the gut then invade muscle and nervous tissue.
In USA ME was wrongly assumed to be Glandular fever (EBV)
1970 In the British Medical Journal, psychiatrists Colin McEvedy and A.W. Beard categorize ME/CFS outbreaks as mass hysteria, effectively destroying Ramsay's work. They didn’t examine any patients involved, many of whom were still unable to work!
There were major ME outbreaks in 1980s and 1990s. USA health insurance companies, already hit by HIV/AIDS epidemic threatened that US health care would collapse if they had to pay benefits to ME patients (known as CFIDS in USA).
Chronic Fatigue Syndrome was invented by psychiatrists (including Wessely and Co.) in 1988. Since then the definition has been widened so that virtually anyone with any form of fatigue/tiredness can be included.
This invalidates much of the research which is done on ill-defined cohorts and most government funding has been to study psychiatric/ psychosocial aspects.
1996 Royal Colleges Report into ME/CFS, (written by psychiatrists) resulted in a determined effort by some doctors to completely remove the term Myalgic Encephalomyelitis from UK medical language.
Most medical journals refuse to publish any research involving ME in the title.
In 1991 Elaine DeFreitas a researcher at the University of Pennsylvania discovered a brand new retrovirus in the blood of M.E patients. This information was deliberately buried for 18 YEARS until in 2009 the retrovirus XMRV was uncovered by the Whittemore Peterson Institute in 67% of M.E/CFS patients and 4% of “healthy” blood donors. This work has been replicated elsewhere, but British labs, using different techniques have failed to find this retrovirus, and have claimed that positive results (replicated in 3 other studies) stem from laboratory equipment contamination. However as from 1st November 2010 anyone who has ever had a diagnosis of ME/CFS is banned from donating blood “to protect the ME sufferer” – not in case XMRV is present and might contaminate the national blood supply. N.B. As yet XMRV is not proven to cause any disease. It is related to HIV but has a different mode of action and not so easily transmissible.
NICE Guidelines 2007
Based on very few, suspect Randomised Controlled Trials, with high dropout rates -
Ignored patient protestations and some 4,000 published papers showing ME/CFS to be a PHYSICAL illness. (Not considered by NICE as they were not randomised controlled trials, due to lack of research funding, which mostly has to comes from patients.)
NICE proscribes many treatments which have been shown to be helpful – e.g. injections of vitamin B12, Mg, Gamma globulin, thyroid hormones etc.
Proscribes tests and investigations that might indicate a viral cause.
Their only recommended treatments are Graded Exercise Therapy and Cognitive Behavioural Therapy. The former has been shown in patient surveys to be harmful in most cases and the latter to be at best ineffective and occasionally harmful.
Government has spent millions on research into psychological causes.
FINE Trial £1.4M – proved current treatments has no lasting effects.
PACE Trial £5M+ (PACING,
ACTIVITY AND COGNITIVE BEHAVIOUR THERAPY: A RANDOMISED EVALUATION)
should have reported by September but still no results
In 2003 £8.5M earmarked (ring-fenced for two years) to set up CFS/ME diagnostic /treatment centres in England. Mostly established in psychiatric hospitals or headed by psychiatrists.
In the last 3 years a group of doctors of the Wessely school have set themselves up as THE training group for GPs in UK – their conferences involve mainly psychiatrists.
Dr Abhijit Chaudhuri, “There is abundant evidence of physical abnormalities in CFS patients after exercise, giving rise to symptom exacerbation beyond normal aches and pains. Health care providers must understand the unique effects of exercise on people with CFS. Just as CFS patients may be overly sensitive to medications, even in reduced doses, they are sensitive to exercise, which causes a delayed relapse even if the exercise seems well tolerated at the time. Therefore, “Like pharmaceutical therapies, prescribing exercise as therapy . . . must be predicated on understanding the risks and benefits of exercise as thoroughly as possible. Only in this manner can the ‘right’ dose be achieved.”
In the absence of any effective curative treatment (apart from medication to control specific symptoms), the only solution for the ME sufferer is to learn to PACE one’s activity and CONSERVE ENERGY to enable the body to heal itself. By this means most sufferers are able over time to improve to 60 or 70% of former activity levels. Unfortunately some sufferers never improve, or deteriorate.
I am one of the lucky ones who have improved from under 10% to 60-70%, largely thanks to getting involved with Shropshire ME Group for 23 years and learning about the disease while seeking to help group members who are fellow-sufferers.
In the end you begin to realise that what Dr Dowsett (SMEG Patron and medical advisor) said all those years ago was absolutely right - that the body is trying to heal itself, and a lot of the time you’re better off avoiding people doing things to you, and let it get on with it.
There is so much misinformation out there. In a recent news article Yvette Cooper MP who has apparently recovered from ME pronounced that her consultant told her that 90% of pwME recover within a year!
Prof William Weir, her consultant (one of the good guys), had to refute that with the statement,
"I enjoyed reading the recent Yvette Cooper interview. Nonetheless as her consultant when she suffered from ME/CFS (which she put into the public domain in an article in the Independent and also the Daily Mail) I have to put right the assertion that "90% of people recover from ME" The correct statistic is that 90% of recoveries occur in the first year, not 90% of people recover. I would be very grateful if you could arrange to publish this correction as the misconception that "90% of people recover" distorts the true picture of a disease in our community which wrecks the lives of in excess of two hundred thousand people, both sufferers and their carers.” William RC Weir.