ME and me.

Introduction: It may seem odd posting a piece about health on what started as a poetry blog. They are both part of who I am. Think of the blog so far as a meal I’ve invited you to share with me. This piece is the meaty, spicy, chewy main course of 4300 words that may take some time to digest, the piece about literature of 1500 words is the dessert, light and fluffy but still fairly filling, and the limerick is the after dinner mint. Feel free to join me in any course and to leave the table when you have eaten your fill. I hope you don’t get indigestion.

ME and me.

A heady mix of imagining, factual reporting and autobiography.

Imagine, if you will, that a new illness were to arise in Britain that did not show abnormalities on the usual range of straightforward blood tests available to GP’s. Imagine that this illness struck down more people than MS, more than Parkinson’s disease, twice as many as have HIV in Britain.

Imagine now that many sufferers do not get better, and some are so ill as to be confined to bed, for weeks, months, even years, a few so ill as to need tube feeding and complete personal care, unable to bear light or noise and in severe pain for months or years on end. Some die from it.

Imagine these people suffer from a range of physical and cognitive symptoms, the central one being severe flu-like symptoms that last days, weeks or months brought on by the smallest amount of exercise, too lightly called post-exertional malaise. Imagine them also suffering disordered sleep, difficulties with concentration, muscle pain and weakness in all muscles, especially in many cases in the legs leading to a feeling that the legs are going to collapse after a few steps. Other symptoms often found include swollen glands, sore throat, headaches, balance problems, dizziness, nausea, gut problems, postural hypotension etc.

Imagine this illness affecting previously healthy active people, mainly teens and young to middle aged adults from all strata of society. Imagine this illness persisting in many patients for years, destroying careers and families, fewer than 10% achieving lifelong full recovery.

Imagine now that some medical researchers do find evidence of physiological changes in these patients in a range of organ systems – endocrine, cardiac, muscle, mitochondria, gut, brain and spinal cord etc., but no definitive test is found yet that can be easily done from a GP surgery, and no treatment is found yet that works for all patients.

Remember this is an illness that affects as many people in the UK as HIV and MS combined. Remember this is a severely disabling illness with all the hallmarks of a complex multi-system physical illness in patients showing no signs of psychological illness.

* * *

How do you think the medical and political world should respond?

Of course, you say, this is a major medical crisis, costing the country billions in lost working hours, destroying education and careers, disrupting families, leading to major levels of disability.

Of course doctors will provide all the care they can, listening to patients, learning what is known as research around the world gradually reveals the range of physiological changes occurring in these patients, supporting patients and making sure they have appropriate care and medical tests while a search is made for effective treatment. Of course doctors will believe patients have a real physical illness. Of course doctors will take it as seriously as MS, Parkinson’s and HIV. Won’t they?

And of course politicians will be making this a priority for proper biomedical research funding and ensuring that those affected are provided with the benefits and support they need if they are unable to work.

* * *

Now let us look at a true story.

In 1955 there was an outbreak of an unknown illness affecting mostly medical staff (doctors and nurses) at the Royal Free Hospital in London. Doctors at the time put it down to a virus and found that in many cases it had effects that persisted for months or even years after the original infection. The hospital was closed for 3 months and some staff were never able to return to work, remaining severely debilitated. Medical tests at the time showed clear signs of physical abnormalities. This was clearly a physical illness triggered by a virus. Research showed that the Royal Free Illness was not a new virus, but had been endemic in the area for some time before the hospital outbreak. These findings were published in medical literature at the time.

Similar illness patterns occurred in other parts of the world, often noticed by medical authorities when outbreaks occurred in people living closely together such as nurses or soldiers, but on investigation found to have been endemic in the area prior to outbreak, again a significant proportion of patients had ongoing serious health problems, with the same major symptom patterns emerging regardless of which particular virus set it off.

The condition became known as Post viral fatigue syndrome or as Myalgic Encephalomyelitis, the former name recognising the viral onset, and the latter the effects on neurological and muscular systems. ME was classified by the World Health Organisation as a neurological illness.

* * *

In 1970 two psychiatrists wrote a piece published in the British Medical Journal claiming that the Royal Free outbreak was a case of mass hysteria. This was a hypothesis without evidence and written without examining or talking to any of the patients. The hypothesis took off in the media,
presented as fact.

In 1986 Doctor Melvin Ramsay who was the infectious disease specialist at the Royal Free Hospital at the time of the outbreak wrote a short book outlining the history of this and other outbreaks and the state of scientific knowledge at the time. He gave clear evidence refuting the mass hysteria hypothesis.

Meanwhile around the world, most doctors did their best to help patients, and researchers, with little funding, did studies that continued to reveal details of the multi-system abnormalities in patients with ME.

GP’s probably felt helpless to help their patients. Medicine had advanced sufficiently by the late 20th century that doctors were able to diagnose most physical illnesses and understand the underlying physiology. There were tests to distinguish between illnesses. Treatments were advancing too. GP’s were no longer used to seeing patients with diseases for which they had no diagnosis or treatment. They no longer felt able to tell people to take the pink medicine and go home and rest until they felt better.

But ME was different. The normal range of blood tests available to GP’s did not show up any abnormalities, so all they could do was tell patients they had post-viral fatigue, and after 6 months change it to ME, sign them off work for a week or two whenever they came back with a relapse, and probably hope not to see them again. Home visits were hard to get except for acute emergencies, so many of the more severely affected ME patients simply stayed home for months or years without ever seeing a doctor.

I was diagnosed with PVFS then ME in 1990 by a GP. My GP’s were sympathetic and we tried a few symptomatic treatments which didn’t help, and signed me off sick for a week or two whenever I reached the stage where I couldn’t stagger in to my teaching job.

Some GP’s referred patients to specialists in different fields depending on the prominent physical symptoms, so patients were seen by neurologists, rheumatologists, endocrinologists etc. Sometimes patients became distressed at the lack of help available and their continuing level of physical debility and GP’s tried prescribing antidepressants and when these did not work, or because they believed the mass-hysteria / psychosomatic hypothesis, referred patients to psychiatrists. Some psychiatrists assessed the patients as not suffering from any psychiatric condition and discharged them back to their GP’s. Others probably believed the symptoms were psychosomatic and tried to help patients or referred them back with a psychosomatic diagnosis.
The only time I saw a consultant was a rheumatologist paid for by my employer when I reached the stage of needing to be ill health retired.

* * *

In 1993 the British government department responsible for assessment of benefit claimants (the DWP), employed a large American health insurance company to advise it on ways of getting people off sickness and disability benefits which were costing a lot of money. The major obvious target was people with medically unexplained symptoms, ME being prominent among these, despite all the worldwide evidence of physical illness. They were helped in large part by a small group of British psychiatrists who worked for the insurance company or the DWP as medical advisors and who had developed a hypothesis, still with no evidence, of ME as a psycho-social illness, a medical sounding made-up term for malingering. This enabled both insurance companies and the DWP to refuse payouts to sufferers.

These psychiatrists went a step further than before. Even worse than a psychiatric illness, this was to be designated a non-illness. They decided all the debility was due to ‘deconditioning’ and the persistence of symptoms as due to ‘wrong illness beliefs’ – again, with no evidence, and in the face of increasing biomedical research evidence. They wrote papers and carried out small trials using a distorted version of cognitive behaviour therapy, CBT, to ‘correct wrong illness beliefs’ and Graded Exercise Therapy (GET), to overcome ‘deconditioning’.

Despite only minimal and transient improvement on questionnaire based tests in these trials; despite the decision not to use any physical or physiological tests that would have showed up abnormalities; and despite survey evidence by patient groups showing the detrimental effects of GET, they trumpeted CBT and GET in the media as the best treatment for ME at the same time implying that this was proof that ME was a psychosomatic condition. They used their influence to get the Nice guidelines for doctors to recommend these treatments. Thus was ‘yuppie flu’ born. This was licence to pour scorn and ridicule on sufferers. Even families, colleagues and friends began to disbelieve.

A few key psychiatrists in this group managed to get themselves into positions of power, for example on the Medical Research Council, to ensure what little research funding there was for ME went on their pet projects instead of biomedical research; on the NICE guideline group, and to get the ear of government to make sure their theory held sway, and in the Science Media Centre to ensure the media only got their spin on the stories. Professorships, research careers, lucrative insurance company contracts, prizes and a knighthood have been built on this false theory. The universities where the researchers were based gained research status credits, so have a vested interest in the research being accepted unchallenged. Even some text books for doctors in the UK list ME as a psychosomatic illness, despite the WHO classification.

* * *

In the early 2000’s the the largest trials of ME treatment were funded by, among others, the Medical Research Council and the DWP (the only medical study it has funded). Millions of pounds of were spent on 2 projects run by psychiatrists to test CBT and GET against standard medical care (SMC) and APT, a version of pacing. The same group of psychiatrists was involved. They had an agenda.

The FINE trial on severely affected patients showed small transient improvement in the CBT/GET group, or rather on those who made it to the end of the trial. This slight improvement on questionnaire results had vanished by the end of the trial. There has been little publicity of these results.

The PACE trial on mild to medium sufferers showed similar small transient improvement in the GET and CBT groups. In both cases the measures showing this slight temporary improvement were mostly based on questionnaire, not on physical tests. The results of both trials, particularly the PACE trial have been spun and distorted in the media and in a string of research papers.

There are multiple problems with the PACE trial, including:

Researchers not declaring conflict of interests to patients, (insurance company employment);

They did not tell the nurses and physios they trained to administer CBT or GET or the patients that these were only hypotheses and did not tell them about the biomedical evidence or the well documented harms done by GET.

A very loose definition of the illness as ‘6 months of unexplained fatigue’ as the primary symptom, thus excluding many genuine ME patients who will list post exertional malaise as their main symptom, and enabling the inclusion in the study of patients with other conditions such as depression and fibromyalgia which might indeed be helped by exercise;

Analyses of the data in published papers that cherry picked results that suit the theory. For example changes have been made without explanation to recovery criteria specified in the approved research protocol, such that someone at the start of the trial could be classed as ill enough to be in the trial, could get worse, and be classed as recovered at the end.

Other results, presumably inconvenient to their theories, such as the step test have not been published in readable form, and it was decided not to use activity meters to measure patients actual activity levels as specified in the protocol. No results have been published showing how many patients recovered on the originally specified criteria of recovery.
Patients and patient groups have complained about the trial, its methodology and the distorted published results. Any questioning of the findings or requests for anonymised raw data are treated by the researchers as ‘vexatious’ or ‘harassment’ or both. Patients who have dared to question the trial have been characterised as a small vocal minority of troublemakers by the researchers who paint themselves as victims of harassment.

Now some very senior medical scientists around the world have started to look into this and have requested anonymised data for analysis and the furthering of scientific understanding. The PACE trial authors are refusing to share anonymised raw data for other scientists to study as is considered good practice in science today. These requests too are being either ignored or accused of vexatious behaviour or harassment.

What are they trying to hide?

* * *

How could so few people hold so much power over the lives of a quarter of a million suffering people in Britain, and with influence spread around the world?

Many sufferers in Britain are now faced, not with the care, support, and medical research they need, but with ridicule, neglect and disbelief from family, friends, colleagues, the media, and their doctors, refusal of benefits and social care, alone and suffering. Some are forced to undergo CBT and GET before they can get insurance payouts, making their condition worse. Some children are taken into care, forced to exercise, disbelieved, their parents accused of Munchausen syndrome by proxy.

The only so called specialist care available in many parts of the country is CBT and GET. No warnings are given to patients undertaking GET that exercise may make their symptoms worse, sometimes for the rest of their lives, sometimes, in those whose hearts have been affected, at risk to their lives. Patients are not told about the research evidence that supports this.

Meanwhile, in a few clinics scattered around the world, patients are believed and treated with care and compassion. ME is properly diagnosed and defined, not as a vague catch-all chronic fatigue. Research projects continue around the world with some promising drug treatments being tried.

* * *

I used to think it was my doctors’ fault for not knowing enough about ME. I thought it was neglect based on an unwillingness of busy GP’s to find the time to learn more. Now I understand better.

Doctors have been told in their textbooks and medical training that this is an imaginary illness. Why would they see the point of learning any more about it?

They have been told not to pander to patients’ requests for different tests, as this would be reinforcing their false illness beliefs, they have been told to assume that vague seeming symptoms are just a sign of morbid illness focusing, to tell us to get out of bed and try to get more exercise, to sign us off for a week or two at most at a time and get us back to work.

Some GP’s and hospital doctors when told a patient also has ME dismiss other serious health symptoms as part of their imaginary illness. How can a busy GP or specialist in other conditions know any different?

* * *

Now imagine for a moment that psychiatrists had never become involved in ME. That it has rightful place in the pantheon of physical illness. That as much money and effort had been devoted to researching it as MS, Parkinson’s disease or HIV. Just imagine where we might be now.

At worst ME would still be classed as not fully explained. There might not yet be a cure. But at least patients would be taken seriously, symptoms would be properly investigated and patients would not be forced to exercise too soon.

Maybe we’d still be back at the stage things were when my father got a post infection malaise back in the 1930’s and was sent to the seaside to stay in a boarding house for several months to be looked after and rest for as long as he needed to, and when, in the 1940’s and 1950’s, he had recurrences of what the doctor then called a recurring virus, he was put on bed rest and as much sick leave as he needed, in the 1940’s being sent to convalesce on his cousin’s farm for 6 months, and in the 1950’s my mother looking after him while he convalesced for weeks or sometimes months at a time. He wasn’t given a week’s sick leave or told to exercise. He recovered fully and lived a full and active life.

Others over the centuries have become invalids, or had recurring illnesses needing long periods of convalescence, for example Charles Darwin and Florence Nightingale may have had ME. This is not a new illness, just the last unexplained physical illness or group of illnesses that still needs research.

ME may be becoming more prevalent now that people suffering post viral symptoms are being sent back to school or work too quickly, being told to exercise more. More mothers may getting ME as they try to juggle work and child care feeling they have no time to be ill. Being an ill defined ‘invalid’ who needs to rest is no longer an option. Doctors can no longer prescribe a rest cure by the sea. Parents can be fined for keeping children out of school, some are wrongly described as school refusers and forced to go back before they are fully well.

Stomach ulcers are no longer a sign of neurosis, they are a bacterial infection, epilepsy is no longer possession by the devil, many other physical illnesses have been explained for the first time in the last century. One day ME will be explained too, possibly as a group of illnesses.

* * *

You may notice that I choose to call this illness ME, not CFS – chronic fatigue syndrome, a name designed to make light of the illness, enabling people to say to sufferers, ‘oh, yes, I get fatigued too’, and enabling doctors to place under this general umbrella term everyone who gets a bit tired, again enabling them to make light of the condition.

Imagine calling Dementia chronic forgetfulness syndrome, depression chronic grumpiness syndrome, Parkinson’s disease chronic shakiness syndrome, Polio chronic stiffness syndrome…..

Now imagine the government spending £6 million on:
a study of rainbow therapy for chronic grumpiness…,
a study of break dancing therapy for chronic stiffness…,
a study of waterboarding therapy for chronic forgetfulness…,
a study of exercise therapy for chronic fatigue…
without separating out those with serious medical conditions or doing valid tests of outcomes,
and without proper warnings to patients about, or reporting of, adverse effects of treatments, including possible death.

Imagine letting the people carrying out the study be those who invented the theory out of thin air for their own profit. Imagine letting them get away with changing the approved study protocol to make sure the study ‘proves’ what they want to prove, and refusing to share the data for others to analyse and check, as genuine scientists would do.

They wouldn’t … would they?

* * *

Some may wonder that I have the gall to compare ME to such serious conditions as MS, Parkinson’s disease and HIV. After all, fatigue doesn’t sound too bad, and not many people are recorded as dying of ME. And if you look at an ME sufferer, much of the time they don’t look particularly ill. You may know someone with ME who is still able to work, at least part time, you probably don’t see people with severe ME because they are at home in bed out of sight. You may know someone who had ME and got better, or says they got better, but still needs to rest more than before and has relapses. You probably also know people in the early years of MS, Parkinson’s disease and HIV who are still able to work and lead relatively full lives. Do you question the reality of their suffering?

I read a quote recently from an American doctor who has specialised for many years in treating patients with HIV and with severe ME, and who said of the two, with present available treatment, she would rather have HIV.

* * *

A prediction / hope / dream for the future.

Sometime in the next three years (I can dream), the PACE trial will finally be totally discredited. All papers reporting it will be withdrawn with full explanation and apology. The psychiatrists involved will lose their professorships prizes and honours and be disgraced as charlatans and struck off for malpractice.

Doctors, nurses, occupational therapists and physiotherapists as well as patients will be fully informed of this, with retraining as necessary. Patients who were not warned about known detrimental effects before undertaking GET, and whose health worsened as a result will be fully informed and compensated. ME will no longer be called CFS, and will appear in all medical textbooks and curricula alongside MS, etc. as a serious multi-system physical illness.

Patients will receive the care they need and the state benefits they need while they go through the new treatments that have been developed in other parts of the world, or possibly even in the UK.

Patients in any subgroups for whom no proven drug treatment is yet available will, in early stage of the illness and during relapses, be allowed to listen to their bodies and rest as much as they need to without pressure to go back to work or exercise before their bodies are ready, a stage which will be able to be determined by definitive tests. Patients severely effected will be given the same level of support as patients with other physical illnesses with the same level of debility.

By treating the illness properly and funding high quality biomedical research the government and health insurance industry will discover that in the long term this saves money.

* * *

I have a dream that this might happen in my lifetime after 26 years of illness with increasing debility and disability, brought on, at least in part, I believe, by wrong treatment, by reading and believing the NICE guidelines, by driving myself to keep going, to keep working for as long as I could, to go back to work repeatedly over many years after relapses while still feeling very unwell, to exercise as much as I could manage, to the stage where I am now housebound, able to walk slowly up to 10 metres at a time before needing to sit and rest, needing to lie down for most of the day, unable to sit on an upright chair without arm support for more than a few minutes at a time, in a lot of pain in all my muscles, sleeping very badly but reacting too badly to sleeping pills to want to take them, with frequent headaches, nausea, dizziness, gut problems, I could bore you by going on….

Nearly 40 years ago I had glandular fever, and after 6 months had not fully recovered. Someone, not a doctor, told me to go to bed and do nothing for 3 weeks, then get up gradually. I did, and I recovered completely and was able to live a full active life for 12 years.

Unfortunately I was not given the same advice when I was diagnosed with post-viral fatigue, and, with a family to support and care for, total rest was never possible again. Who knows what might have happened…

Too late for regrets, and I don’t like look back too much. I have probably done too much damage to my body to expect full recovery now, but I go on hoping.

Meanwhile, when I can, I am lucky enough to still be able to enjoy short visits from family and friends, reading, watching TV (lying down for both), listening to the radio and even trying to write poetry – badly but with pleasure. I am not depressed, except occasionally by circumstances. I keep on hoping.

I don’t want people to feel sorry for me, I am lucky to still be able to do some things I enjoy. I do want people to believe me and to understand. Occasional messages of friendship and support are always welcome and a great lift to the spirits. Short prearranged visits from nearby friends and acquaintances are also welcome.

All errors of fact are my own.

Sources: The ME association, Action for ME, The Lancet medical journal, David Tuller’s posts on Virology blog and James Coyne’s blogs. More details on request.

Thank you for sticking with me to the bitter end. I hope you haven’t got indigestion.

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11 Responses to ME and me.

  1. Andrew Davis says:

    Very well written and thought provoking. I do hope the right medical minds apply their efforts skills to find effective treatment and eventually a cure

  2. Beryl says:

    This is a story of the health system care system led astray by misguided academia. So much research undertaken is poorly constructed and has a bias around the researchers goals. It is depressing that so many people are influenced by work because it has the headline…research if that makes it true. I hope one day your wishes come true Trish

    • trishrhymes says:

      Thanks Beryl, there does seem to be a big problem with the rush of academics to get as many papers published as possible, never mind the quality. James Coyne’s blogs are a real eye opener on this.
      In the case of ME, I think you’re right, but I think there are other issues as well, the insurance and government backing of the researchers to try to cut funding to sufferers, and the fact that ME is a multi-system illness that doesn’t obviously fall under any one specialism, so was ripe to be hijacked by these psychiatrists. Maybe it’s a bit like the story of the group of blindfolded people trying to describe an elephant by each feeling one part. The each thought they were dealing with a completely different animal, and nobody was there to make the whole picture. Just imagine the psychiatrist coming along, listening to all their descriptions, and concluding that the elephant didn’t exist at all. Not the perfect analogy…

  3. Rob says:

    A great entry for your blog Trish and it has educated me quite a lot.too. My own experience with Parkinson’s is that it is not a psychoogical disease but that it has psychologicall effect.s and these are the things I can work on so as not to feel too powerless. I’m not going to tell you to do that thoiugh, the ‘what you need to do is…’ brigade has failed to recruit me to any of their ideas. With your years having ME you’re the expert. I have had people belittling my symtptoms ( (a bit) and quite often nit seems that they do this to make themsellves feel better.

  4. trishrhymes says:

    Thanks, Rob. It’s good to get your perspective as a sufferer from Parkinson’s Disease.
    I agree that ME also has psychological effects, any long term and/or serious illness does. And I agree that with ME psychological help can be useful. Some sufferers who have had CBT to help them adjust to the impact of the illness on their lives have found it helpful.
    What is not helpful is the distorted version of CBT used by these particular psychiatrists, and as a result of their efforts, the version of CBT offered alongside GET in some ME clinics, which is aimed at altering the patient’s beliefs, ie persuading them that they do not have a physical illness and that they should therefore exercise more, and to persuade them that any detrimental effects from exercise are good signs. As a result many patients health has been further damaged. As far as I’m concerned, this is trying to persuade the patient of something that is not true, ie brainwashing.

  5. Thanks for such a thorough and thoughtful analysis of the history of this very misunderstood condition. It’s helped me understand it better.

  6. trishrhymes says:

    Thank you Catherine for taking the time to read and understand.

  7. trishrhymes says:

    A quick correction – I was wrong about Canada treating ME sufferers well. I’ve just read a horrendous item about the Canadian funding body turning down a request for a grant for biomedical research on ME on the grounds that ME doesn’t exist, and is a figment of patients’ imagination… I’m speechless at the ignorance displayed. Grrr! A long way to go.

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