This could happen to you.

A severely disabling physical disease is striking down millions of people in their prime around the world, mostly children and young to middle aged adults.  In most cases they don’t recover and it blights the rest of their lives. About a quarter of sufferers are house-bound or bed-bound, often for years, hidden from the world.  All races, cultures, genders, occupations, classes are affected indiscriminately. It could strike you out of the blue tomorrow. No one is immune.

So why, you might sensibly ask, is this not a medical emergency we’re all hearing about, why are governments and health agencies around the world silent about it?  Why are they not rushing to take the sort of drastic action we hear about when epidemics strike? Why are we not being warned about this illness and doctors being thoroughly briefed on what to do?  Why is there not a medical specialism dedicated to dealing with it?

Read on and you’ll find out why.

There is nothing you can do to prevent yourself being the next victim of this disease.  It’s not thought to be contagious, though sufferers are not allowed to donate blood. It often starts with an ordinary infection like glandular fever (mononucleosis) or a simple throat or gut infection, or a series of infections.  The infection goes away, but the victim is left debilitated, feeling like they have permanent flu, and unable to return to anything like their previous level of activity. Students’ studies are curtailed, workers’ jobs lost, hopes and dreams put on hold, sometimes for the rest of the person’s life.  

Sufferers can experience constant pain, difficulty with cognitive tasks like concentration and memory, extremely rapid muscle fatiguability so even simple daily tasks become impossible, difficulty standing up for more than a few minutes without collapsing, and a host of other unpleasant symptoms.   Worst of all, the more they try to overcome the problem by remaining active or trying to get fitter, the sicker they get – a strange phenomenon called ‘post exertional malaise’ (PEM) rarely seen in any other disease.

For the severely affected, a simple task like getting out of bed and going to the bathroom can send them into a PEM ‘crash’ that can last weeks or months, some unable to speak or eat, unable to tolerate light, noise or touch, lying in darkened rooms needing tube feeding and total care for years.  For the more mildly affected who may be able to continue with some aspects of normal life, any activity beyond their ‘energy envelope’ sends them crashing back to bed feeling too sick to get up for days or weeks at a time, or even for much longer. And anyone mildly affected can become severely affected at any time.

It’s real, it’s serious, and it’s not going away.  There are no proven biomedical tests for it, and no treatment.  It remains largely hidden away, behind closed doors in homes all over the world.  Many sufferers lie in bed neglected and forgotten by the medical and care systems.  Doctors are not taught about it properly, if at all, and are baffled by patients presenting who say they are ill, but don’t fit any of the recognised list of illnesses that can be tested for and treated with drugs.  Because so many different organ systems in the body are affected they don’t know which specialists to refer patients to, and often find it hard to believe a patient can have an illness that is so debilitating in so many ways without showing up on standard tests, and often without even looking particularly ill.

This article is written with a UK perspective.  But the disease is worldwide and the events described have impact all over in the world.

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Here’s a scenario that could happen to you sometime soon.

Scenario 1:

You get an infection.  Nasty, but after a few days, or a week or two, you seem to recover and you’re back at work.  But you don’t feel right. After a few weeks or months of struggling to keep going with your normal activities you go to your GP.

You say to the GP:

‘I feel like I’ve got flu, but it’s been going on for months and won’t go away.   I feel sick all the time, I feel weak and I wake up every morning feeling like I can’t get out of bed, my muscles hurt all the time and don’t seem to be working properly, I keep needing to sit or lie down, my legs feel like they are going to go from under me and I feel lightheaded when I stand for long, I keep getting headaches, stomach aches, sore throats, I can’t concentrate, my work or studies are suffering, I can’t do sport any more or socialise, I’m barely managing to get to work, some days I don’t make it at all, and I need to spend my weekends in bed …’’

And, after running standard blood tests, the doctor says:

‘’Good news, the tests show there’s nothing wrong with you – everything is normal.  Just go home and try to get plenty of sleep and exercise and good food, and try not to focus on your symptoms so much, you’re probably just a bit stressed, I’m sure you’ll soon be fine.’’

And you try really hard for a few more months.  After all, the doctor says there’s nothing to worry about, so you push through, trying to exercise and sleep and eat well as the doctor has advised, but after a few more months you’re feeling a whole lot worse.  However hard you try, you can do a lot less than you used to be able to, and you feel awful. You go back to your GP.

The GP looks annoyed, impatient, even skeptical, but grudgingly runs the same blood tests again and finds they are normal.  So they give you a depression questionnaire to fill in. Unfortunately a lot of the questions don’t distinguish between the fatigue, loss of social life, and worry about symptoms that you are experiencing as a result of having an undiagnosed debilitating physical illness, and the same answers on the questionnaire which could be caused by clinical depression.  So the GP looks at the questionnaire results and decides you must be depressed and prescribes antidepressants.  The GP knows that exercise often helps people with depression, so urges you to keep exercising, recommending adding a daily walk.

Six months on, having tried a couple of different antidepressants which make no difference but give you unpleasant side effects, and having had to cut back the daily walks because they make you crash into a state where you can’t get out of bed for a few days except to stagger to the loo, your physical state has worsened further, and you are now in danger of losing your job if you haven’t lost it already, or you have had to give up your studies.

The GP has heard of something called Chronic Fatigue Syndrome (CFS), and decides at this stage that maybe that’s what you’ve got, since the antidepressants don’t seem to be working.  They have heard that the best treatment for this is exercise or CBT, so they send you off to the nearest CFS clinic to try that. Or your local health authority is pushing GP’s to send all their patients with medically unexplained symptoms (MUS) which they say includes CFS, to their Improving Access to Psychological Therapies (IAPT) clinic.

With renewed hope now that you’ve actually got a name for you condition and been referred to a specialist clinic, you make the supreme effort to sit through a series of group sessions of CBT or Graded Exercise Therapy (GET) or Activity Management run by a nice earnest young woman (or man) who assures you that if you stop focusing on your physical symptoms and put aside your unhelpful beliefs that your illness has a physical cause and follow their program of gradually increasing activity, there is good evidence you will get better.

You find this hard to believe after all your experience so far, but you’re getting desperate, and the therapist is so kind and earnest and sure she knows what she’s doing that you want to believe her.  At first it seems to be hopeful. She gets you to cut back your activity to what you can do without crashing for a couple of weeks. That seems to stabilise things a bit, so your confidence rises that she knows what she’s doing.   But then she tells you to increase your activity by 10% every week.

You try hard, you really do, but by week 4 you’re so badly crashed you can barely drag yourself back to the therapy session.  When you tell the therapist this, she assures you that it’s normal and you’ll soon work through it and improve. She reminds you that it’s unhelpful to keep focusing on your physical symptoms.  You are so determined to beat this thing you believe her and push on.

In the last session in the series the therapist gives you a questionnaire to fill in about your symptoms and whether the therapy was helpful.  You are still caught up in the therapist’s narrative of ignoring symptoms and improvement and think she’s a nice kind person and seems to know what she is talking about, so you fill in the questionnaire making light of your symptoms, saying you can do things you really can’t because you’ve been persuaded you really ought to be able to do them by now if you try hard enough.  You don’t want it to look like you’re not trying. Your answers make it look like the therapy has worked for you, you’re getting better – even though you’ve had to cut back drastically on everything else just to keep doing the prescribed activities and you feel dreadful.

On a bit of a high from all the positive talk and mutual support in the group, you decide to be brave and walk home instead of catching the bus. After all, it’s only half a mile, you should be easily managing that my now. You’ve just filled in a questionnaire saying you can.  By the next day you’ve crashed so badly as a result of this extra exercise that you are unable to get out of bed for months, and it looks like extending into years. You are completely dependent on family to take care of you, all hope of study and career cast aside.

Meanwhile the IAPT or CFS clinic has reported back to your GP that the treatment was successful, and you should continue following their advice and go on gradually increasing your activity.   And by the way, do send us more of your ‘tired all the time’ and hard to diagnose patients, we have a very high success rate.

Your GP, believing the clinic’s report, and convinced that you can’t be that ill from something called ‘chronic fatigue syndrome’ which just sounds like a bit more than usual tiredness, decides you are malingering and refuses you home visits. So you are left struggling with no medical care, no state benefits, since these need medical reports and wholly dependent on whatever family or friends you have left who have not taken the same path as the GP and written you off as a malingerer.

Over the years this has been going on, and against the advice of your GP and the clinic therapist, you have started looking online and found lots of websites advertising alternative treatments that claim to be effective.  You’ve even joined a couple of facebook groups where everyone claims one of other of these alternative treatments is helping them. You don’t realise that most of their members don’t actually have ME/CFS, or are stooges of the company producing the product or therapy, nor are you aware that people who say the treatments didn’t work for them have been banned from the group.  

You’re so desperate now that you have reached the end of the road with the NHS that you’ll try anything. Your few remaining friends add to this with advice they’ve seen on the internet urging you to try the latest fad.  You spend lots of money over the next few years trying alternative therapies, from vitamins and herbs, to cold baths, to meditation, to standing on a circle shouting ‘NO’ at your negative thoughts (I kid you not). None of these help and some make your symptoms worse and all of them cost a lot of money you no longer have.

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How could this happen in the days of medical breakthroughs and high tech medicine?  How can there be 250,000 people in the UK suffering from a condition their doctors don’t understand and often don’t even believe is real? How can it be that some doctors who themselves suffer from ME/CFS are too afraid to tell their colleagues what is wrong with them for fear of being belittled and disbelieved? How can tens of thousands of seriously ill people be left lying in bed for years at a time with little or no medical help and inadequate care?   

How could they have got it so wrong?

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The answer is devastatingly simple.  Medicine took a wrong turning over 30 years ago,  and it seems unable or unwilling to turn back despite mounting evidence that it was indeed a seriously wrong turning.  In 1970 two young psychiatrists had a look at the medical records from an outbreak of what had been called Myalgic Encephalomyelitis (ME) that affected a lot of staff at the Royal Free Hospital in 1955.  Without speaking to or examining any of the sufferers, they wrote a letter to a medical journal claiming that this condition was not a physical illness but mass hysteria. This despite the fact that the physicians who had treated these same patients had established biomedical evidence and recorded clear symptoms and signs of physical illness in the patients.

The idea caught on.  In the 1980’s a small group of psychiatrists picked up this hysteria diagnosis and ran with it, deciding they would become the experts in a condition no other medical specialism seemed to want to own.  They developed, with no evidence at all, a ‘biopsychosocial model’ (BPS) of ME, ‘explaining’ the symptoms as simply a mix of the patient’s ‘unhelpful beliefs’ that they had an ongoing physical disease, a fear of exercise, and subsequent deconditioning setting in train a downward spiral into poor health.   They postulated, again with no evidence that this could be reversed by a directive form of CBT to ‘help’ the patient overcome their ‘unhelpful beliefs’ and fear avoidance of exercise, and to start exercising again – a bit like the treatment for phobias that uses gradual exposure to the thing you fear to help you overcome it.  Another treatment they suggested took a more direct approach – Graded Exercise Therapy (GET) involved planned weekly increases in activity to overcome deconditioning, based on the assumption again of gradual exposure lessening the supposed fear, and greater fitness leading to recovery.

You can see that sounds kind of logical.  If the BPS model was right, and there really was nothing wrong physically with the patients, the treatments should work really well, and patients return to normal health in droves.  Job done.

This was very appealing to disability insurance companies too, and Government disability benefits agencies.  If ME/CFS could be classed a psychosomatic condition rather than a chronic disabling physical disease, and could therefore be fixable with a bit of therapy or GET, all those claims for long term sickness benefits would magically go away.  And those patients who didn’t get better could be accused of malingering, of not trying hard enough or not wanting to get well, even of some sort of ‘secondary gain’ from being long term sick, and could therefore be denied benefits. It could even be rationalised that giving such patients disability benefits or mobility aids would harm them by discouraging them from trying to get better. This biopsychosocial (BPS) approach was adopted with enthusiasm by the DWP.  What could possibly be wrong with that…?

So this small group of psychiatrists and psychologists with their belief in their shiny new BPS model and their apparently logical deduction that the therapies would work, started doing clinical trials of CBT and GET.  As was common practice for trials of psychological therapies for mental illnesses, the outcomes were measured with questionnaires. You know, like the ones that you, our hypothetical patient in Scenario 1, filled in after your therapy sessions.  Not surprisingly, the questionnaires indicated the therapies worked, just as they did for you, our hypothetical patient. It is all to easy for a skilled therapist to achieve in patients a mix of wishful thinking, of obeying the instruction to ignore or play down physical  symptoms, and a desire to please the therapist and look optimistic, and to be seen to be trying hard to get better – at least until the shine wears off and reality hits.

Without long term follow up to find out whether the patients were really better, and without objective tests of physical and cognitive function, they had no idea that their clinical trials were just telling them about this false short term ‘improvement’ on questionnaires, rather than the actual outcome for the patient in terms of symptoms or the ability to function.  

Large surveys of patients run by ME/CFS patient charities found that the majority of patients treated with exercise based therapies were still just as sick, and indeed many were much sicker after the treatments, just as you are after going through Scenario 1.  The psychiatrists either didn’t know this, or didn’t want to know. They also confused the picture by defining CFS so broadly it could include anyone suffering unexplained fatigue for 6 months, inevitably gathering in people with other fatiguing conditions such as sleep problems, stress or depression who might indeed be helped a bit by taking more exercise.

The psychiatrists involved built their careers around their ‘success’ with these treatments.  They published lots of papers based on these small inadequate trials, and claimed to be world class experts.  Some of them were employed by Disability Insurance Companies and Government benefit agencies as advisers. Their finances, careers, professorships and status were all bound up in their model and treatments being correct.  Perhaps they really believed they were helping patients. Who knows? They certainly had a lot to lose if they were proved wrong.

The NICE guidelines for ME/CFS were written in 2007 on the basis of these small inadequate trials.  The standard treatments around the world became GET/CBT as the psychiatrists involved talked to the media and travelled the world to spread the word.  They made sure they had influence on the Science Media Centre that had been set up to provide objective science to the media. They made sure they controlled the message.  The public and the rest of the medical profession soon started to believe that people with ME/CFS weren’t really sick, just needed a bit of exercise and therapy. The narrative became, ‘if you don’t get better, it’s your fault’.  Yuppie flu and other derogatory terms were used. It became OK to make fun of these sick people. All based on a made up theory and completely inadequate and flawed research.

Then UK government agencies funded, at a cost of over £5 million, two large clinical trials aimed at making the evidence for treating ME/CFS with CBT or GET definitive.  This was their big chance to prove their theories were right and the treatments worked. Their chance to cement their reputation as the world experts in ME/CFS.

The first of these large trials, called the FINE trial, involved housebound patients and was carried out by specially trained nurses  It was unsuccessful – there were no between group differences at the end of the trial.  The results of this were published, but immediately sank into obscurity. The psychiatrists didn’t want to admit one of their flagship trials had failed and it is never mentioned in media publicity about ME/CFS.

All their hopes were thus pinned on the second trial, called the PACE trial carried out at  CFS clinics with less severely affected patients, again using their very broad definition of 6 months fatigue, and not requiring that cardinal disabling symptom of ME/CFS, post exertional malaise.  There were 4 groups of about 160 patients each to test GET, CBT, SMC (a few doctor visits) and APT (Adaptive Pacing Therapy, a made up and incorrect version of ‘pacing’ preferred by patient groups).  

The trial was set up for GET and CBT to succeed.  They used only subjective questionnaires as primary outcome measures, as in the earlier flawed trials.  As for objective measures – they never properly published the step test which showed no between group differences; abandoned the use of pedometers as an end of trial measure on spurious grounds; employment and benefit claims did not improve and are never mentioned; and so many patients failed to complete the 6 minute walk tests that between group comparisons are invalid.  In other words, the objective measures showed no benefit from CBT or GET or were carried out so badly or abandoned – one can’t help suspecting to avoid the inconvenient truth that there was no objective benefit.

Part way through the trial, they changed the primary outcome criteria for improvement and recovery, weakening them so much compared to the original approved protocol criteria as to make them clinically meaningless. In fact they weakened one of their criteria for recovery to such an extent that a patient could be classed as sick enough to enter the trial, but recovered at the same time on that measure.  Clearly nonsense and completely unacceptable in any clinical trial.  And, to compound their ‘error’, when long term follow up showed no between group differences, the media spin the researchers orchestrated wrongly claimed long lasting success for the treatments.

Patient groups protested that they should have published the results of the trial according to the original trial protocol, rather than the much watered down criteria they switched to part way through the trial.  It took years of battling by a very determined patient to get some of the data released by order of a Freedom of Information Tribunal. It left one wondering, what were they trying to hide? The University holding the data, presumably at the behest of the PACE researchers, spent hundreds of thousands of pounds trying to prevent the release of data from this publicly funded trial.  Sure enough, once the released data was properly analysed according to the researchers’ own agreed and approved pre-trial protocol, the results of the trial were shown to be so slight as to be clinically meaningless.

To put all that in a nutshell.  The PACE researchers broke practically every rule of good clinical trials, to the extent that it is now being taught in some US universities as an example of how not to do a clinical trial.  And despite their best efforts to ‘prove’ the treatments worked, the net result was a small and not clinically significant difference in outcomes between the CBT/GET groups and the other groups.  And even these small differences had vanished away by long term follow up.

The only possible conclusion – it was a null trial.  The treatments don’t work.

Competent and responsible researchers would state as much publicly and ensure NICE guidelines and doctors’ training were swiftly amended, and directive CBT and GET and Activity management based on increasing activity were removed from all treatment clinics.

That has not happened.  Ask yourself why not.

Over a hundred international scientists, doctors, ME experts and ME charities have signed letters to the journals that published the PACE papers asking for the data to be re-analysed or the papers to be retracted.  So far, the journals are refusing to do this.

The BPS proponents have run a campaign of maligning the critics of their research as a lunatic fringe of science deniers and militant patients who threaten researchers.   But under oath at the information tribunal they were forced to admit there were no such threats. They have even spoken on the BBC and a TEDX talk and lectures to fellow medics about the ‘anti-science’ campaign directed against them, painting themselves as valiant scientists standing up for the truth, as brave victims helping patients in the face of militant attacks – a very useful smokescreen to discourage closer scrutiny of the poor quality of their research.  What they are actually talking about is that their science is being criticised. By calling their critics anti-science, they are trying to claim the moral high ground. One of them even wrote to Carol Monaghan MP ahead of a Parliamentary debate, accusing her of ‘conduct unbecoming of an MP’ for questioning his science, while at the same time sending her a briefing paper that attempted to defend the indefensible flaws in the PACE trial, even repeating the incorrect information that the follow up data  showed CBT and GET are effective when in fact the their own follow up paper showed clearly they are not effective treatments.

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The result of all these shenanigans is that patients in the UK are still left with CBT/GET and now IAPT as the recommended therapies.  And the psychiatrists and senior therapists responsible for this debacle are so entrenched at the heart of the British Medical establishment and in senior positions in Universities and with the ear of Government that it has become a herculean task to try to dislodge them, and, more importantly, the edifice they have constructed which has now been shown beyond doubt to be built on sand.

Some clinical trials funded by the Government of the same ineffective and harmful treatments, and even more dubious treatments, and with the same methodological research flaws are even now being done on vulnerable children, in one case promoted in the media as an effective treatment even before the trial started, ensuring biased results before the first patient signed up.  Medical journals are still publishing such trials, ensuring they are peer reviewed by other members of their cabal of BPS supporters who either do not understand, or have a vested interest in not understanding the fundamental flaws in the research and the way the findings are analysed and reported. The lessons have not been learned.

People with ME/CFS continue to suffer appalling mistreatment and lack of proper medical and social care as a direct consequence of bad science and unwarranted power and influence.  Remember your situation in Scenario 1. This is not a scenario from the nineteenth century, this is happening now. You are lying in bed in your darkened room, made sicker by wrong treatment and medical neglect.

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As you lie in bed, you manage to go on-line and find out that there are millions of people like you around the world suffering just like you are.  You learn about the reasons behind your wrong treatment. You look for hope. And you find some glimmerings.

There are some hopeful signs. – particularly in the USA, where the national guidelines have been revised to remove GET and CBT, and ME/CFS has been unequivocally declared at highest level to be a serious multisystem physical disease, and research funding for biomedical research is starting to flow, though still way behind the funding for diseases with equivalent impact.  

Some good biomedical research is being done all over the world, so far mostly small scale and funded by charities.   It has started to show evidence of all sorts of biochemical abnormalities in patients with ME/CFS that point in useful directions, including problems with energy metabolism and neurological and immunological differences between people with ME and healthy people.  Some possible biomarkers are being found, some drugs are being tested or likely to be tested soon. But progress is slow. Much more research is needed. Funding needs to increase massively to match the levels given to equally disabling conditions that are properly recognised.  The wait, for patients, is agonisingly slow.

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Meanwhile, in the UK, NICE has, under pressure from the ME charities, agreed to re-write the guidelines for ME, but not until 2020, and with no guarantee that the BPS cabal who still claim ‘international expert’ status on ME, will not be able to still hold sway.  Their careers and status depend on maintaining the status quo.

A member of parliament, Carol Monaghan, along with a cross-party group of MP’s, has recently held a very good parliamentary debate in Westminster Hall, among other things calling the PACE trial a scandal, and asking for better funding for biomedical research and the immediate removal of GET/CBT from the NICE guidelines.  Similar developments are happening in the Scottish parliament.

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So what can a GP do in the meantime with their ME/CFS patients?  

The easy route would be to wash their hands of the ‘problem’, to cite the NICE guidelines in support of recommending exercise and CBT, and continue sending their patients to CFS or IAPT clinics and telling them to exercise.  

Time to return to you, the imaginary patient.  Remember where I left you with earlier. After years of wrong advice and consequent deterioration, you are now lying in a darkened room, in severe pain, barely able to move, so sensitive to light and sound that you wear and eye mask and ear plugs, unable to care for yourself and with no medical or care provision, wholly dependent, perhaps, on one ageing parent. Isolated and forgotten.

Step into your time machine and head back to the onset of your mysterious illness.  Here’s what happens this time.

Scenario 2:

You get an infection.  Nasty, but after a few days, or a week or two, you seem to recover and you’re back at work.  But you don’t feel right. After a few weeks or months of this you go to your GP.

You say to the GP:

‘I feel like I’ve got flu, but it’s been going on for months and won’t go away.   I feel sick all the time, I feel weak and I wake up every morning feeling like I can’t get out of bed, my muscles hurt all the time and don’t seem to be working properly, I keep needing to sit or lie down, my legs feel like they are going to go from under me and I feel lightheaded when I stand for long, I keep getting headaches, stomach aches, sore throats, I can’t concentrate, my work or studies are suffering, I can’t do sport any more or socialise, I’m barely managing to get to work, some days I don’t make it at all, and I need to spend my weekends in bed …’’

The GP takes a detailed history, notes of all your symptoms, and examines you and does some blood tests.  You return a few days later for the results. The GP says:

‘’Your blood tests are normal, which means we’ve eliminated some of the common conditions that could be causing some of your symptoms, but I can see you are sick and need help.

Going on your range of symptoms and your description of having to cut back a lot on all activity it’s clear you are not at all well. And the severe exacerbation of symptoms that comes on the day after you try to do some of what you used to be able to do? Well, I’d say that’s what is called ‘Post Exertional Malaise’ and is a classic sign of ME/CFS.  Patients often refer to this as a ‘crash’ which seems a pretty good description to me.

ME/CFS is recognised as a physical illness that can get worse if you are not careful to stay within your limits of activity, so I’m going to sign you off work for a couple of months so you can focus on resting properly and giving your system a chance to improve, or at least not go on getting worse.  And during that two months you are to rest and sleep as much as you need to. Listen to your body, don’t push yourself to exercise. And you will be given help with learning to pace your activities.

I’ll prescribe some pills for you to try to help with the pain and sleep problems, but you’ll need to take these slowly, starting with low doses, as a lot of people with ME report low tolerance to some drugs.  I’ll write to your school/employer and send them some information to explain the importance of allowing you to take things at your own pace and rest when you need to once you go back to work when you are ready.  

And, since … symptom is causing you particular trouble at the moment, I’m referring  you to an expert in that particular symptom (orthostatic intolerance, sleep, etc) for further investigations.  That consultant has a particular interest in ME/CFS and keeps up with the latest research, so you can be sure your symptoms will be taken seriously.  She will check I’ve got the diagnosis right and do some extra tests to eliminate other possible causes for your symptoms.

Unfortunately there isn’t a drug or or other treatment that cures ME at the moment, but there is research going on, so there is hope for the future.  What we need to do is help you manage your symptoms to give you the best chance for improvement, but you’re going to need to make some adjustments to your life, at least for a while.  You’ve only been ill for about 6 months, so it’s still possible it’s a temporary post viral fatigue that will resolve during your two months rest, but either way the treatment is the same.

I’d like to see you again in a couple of weeks when you’ve had a chance to rest as much as you need to and to try the medications I’m prescribing for your sleep and pain.  And I’m doing you an urgent referral to the specialist ME/CFS nurse to help you learn to do heart rate and step monitoring and symptom diaries to help you pace your activity and monitor your symptoms to avoid crashes.  You will be provided with an actometer and shown how to use it. You will need to go on using this long term, a bit like diabetics have to go on monitoring their blood sugar, so the monitor will be yours to keep.

You’ll be able to see the ME/CFS nurse when you need to for further help with pacing and monitoring your progress and she can also help you with dealing with your school or employer and benefit applications if you need them and with getting any practical mobility aids and home adjustments and any other help you need, and she can provide you with leaflets to help explain the situation to your family and friends.  The consultant makes sure she keeps up to date with any new developments, so you can be sure she’ll let you know if there’s a new treatment for your symptoms, or, we hope one day, for ME/CFS itself.

If your symptoms become so bad you are unable to visit the surgery you will have the right to home visits from the GP when you need them, and regular home visits from the ME/CFS nurse to ensure you are getting the treatment, care package and state benefits you need.  With careful pacing and the support we’re putting in place now, we hope to avoid that scenario. Remember – listen to your body, and rest when you need to.’’

And the GP hands you a leaflet spelling all this out so you can remind yourself what has been said.

In subsequent months, the GP, consultant and specialist nurse ensure that all necessary further testing is carried out, good symptomatic treatment is put in place and regularly reviewed, and you have learned to pace your activities with the help of the nurse and the step and heart rate monitoring.  Your employer or school is fully informed and on side with helping you on a slow return if you are able, with resting facilities provided for when you need to take breaks. Or if you’re not well enough, you have been assisted with the transition to proper home care and support.

As a result, you are crashing far less often and hopeful that the long term decline in your condition can be avoided and you will have the best possible chance of long term improvement.  You feel believed and confident that you will have the ongoing support you need. You have a good chance of being able to continue with some study or work part time if you continue to pace carefully.

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Not so difficult is it?  No more money wasted on inappropriate and potentially damaging therapies based on distorted clinical trial evidence with therapists who have no clue about the physical basis of the illness and blame you if you don’t improve.  

Instead you now have a GP who listens to and believes you, and is trying to help with symptomatic treatment and appropriate referrals to relevant medical consultants, and a nurse who understand your illness is physical and helps you manage it to pace yourself and deal with the practical effects on your daily life.  When other symptoms arise over the years they take them seriously and investigate properly, never dismissing them as just part of some imagined illness. You are believed and supported.

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Take a moment to compare the two scenarios.  Neither provides the cure you would like, but I’m sure you’ll agree the second one is far preferable to the first.  And gives you the far better chance of a reasonable quality of life, given the seriousness of the disease you have had the misfortune to acquire.  I’m sure we would all opt for Scenario 2.

In the long term this scenario saves the NHS and disability insurance industry money, especially if governments do their part in properly funding biomedical research as well.

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Finally, let us return to the title of this article. ‘This could happen to you’.  It may have already happened to someone you know. Someone who stopped coming to social events, started turning down invitations at the last minute, gradually disappeared from your life without you knowing why.  Or someone who started being erratic in attendance at work, and who eventually left, perhaps without explanation. Or a child in your school or your child’s school who attended erratically and whose parents may even have been reported to social services and accused of harming their child – but the child was sick, and the doctors didn’t understand.  Imagine that happening to your child. Or to you – your life could come to a standstill too, and you could suffer the first scenario I described – disbelief, accusations of malingering, inappropriate treatment that makes your more disabled.

At least, having read this article, if ME/CFS does strike you down you will be alerted to the dangers of the CBT/GET approach and be ready to bail out if you find yourself being made worse by exercise before it’s too late and you end up bedridden for years.  

…………………………………………………………

What can you do?  You can write to your MP to support the demands for better funding, appropriate care and treatment for ME/CFS sufferers, and the immediate removal of GET/CBT from government guidelines, and from clinical practice.  

If you have a role in any health agency, you can work to make sure there is proper understanding and treatment.  If you are a doctor or nurse, you can try to practice scenario 2, not scenario 1. Educate yourself about ME. Ask the ME Association for a copy of their ‘Purple book’ written by and for doctors or read the International Consensus Primer for ME/CFS.  Above all, believe your patients and take their needs and symptoms seriously. Find out what your local CFS clinic really does and only refer patients for treatment if it’s sensible pacing, not GET or CBT. Warn your ME/CFS patients about the dangers of trying to exercise their way to health.  It doesn’t work and it can seriously damage their health long term.

If you work in the DWP or doing benefits assessments you can strive to get it right for ME/CFS sufferers – listen to them, believe them, write honest reports that reflect their reality.   If you are a politician, join the fight for justice for ME/CFS sufferers. If you have a family member, friend, colleague with ME/CFS, believe them and be as supportive as you can.

And remember, the next person you come across with ME/CFS could be the person looking at you in the mirror.  It could be you.

……………………………………………………………………

References

The FINE trial

Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial.  Wearden et al. BMJ 2010;340:c1777

The PACE trial – the main published papers:

White PD, Goldsmith KA, Johnson AL et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet. 2011; 377:823-36.

White PD, Goldsmith K, Johnson AL et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychological Medicine. 2013;43:2227-2235.

Sharpe M, Goldsmith KA, Johnson AL et al. Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial. Lancet Psychiatry. 2015;2:1067-1074.

Attempts to defend the PACE trial

Wessely S. The PACE Trial for chronic fatigue syndrome: choppy seas but a prosperous voyage. 2015. https://www.nationalelfservice.net/…esyndrome-choppy-seas-but-a-prosperousvoyage/.

Articles in Marks DM (Ed.). Special Issue on the PACE Trial. Journal of Health Psychology. 2017;22(9). See below.

Critiques of the PACE trial

Briefing Paper for non scientists explaining the problems with PACE

https://www.s4me.info/docs/PaceBriefing3.pdf

Marks DM (Ed.). Special Issue on the PACE Trial. Journal of Health Psychology. 2017;22(9).

http://journals.sagepub.com/doi/abs/10.1177/1359105317722370

Tuller D. Trial by error: the troubling case of the PACE chronic fatigue syndrome study.

http://www.virology.ws/mecfs/

Sense About Science USA. Editorial: On PACE.

http://senseaboutscienceusa.org/editorial-on-pace/

‘’Do all clinical trial experts love PACE’’ by David Tuller

http://www.virology.ws/2018/07/09/trial-by-error-do-all-clinical-trial-experts-love-pace/

Open Letters to Journals that published PACE and other papers.

See the list collected in Virology Blog:

http://www.virology.ws/mecfs/

To the Lancet on PACE: Nov 2015, Feb 2016, June 2108

To Psychological Medicine on PACE: March 2017

Published reanalysis of PACE trial data

Wilshire C, Kindlon T, Matthees A et al. Can patients with chronic fatigue syndrome really recover after graded exercise or cognitive behavioural therapy? A critical commentary and preliminary re-analysis of the PACE trial. Fatigue: Biomedicine, Health & Behavior. 2017;5:43-56.

Wilshire C, Kindlon T, Courtney R et al. Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychology. 2018;6:6.

Problematic Research on Children with ME/CFS

See the list collected in Virology Blog starting September 2016..

http://www.virology.ws/mecfs/

Supporters of the BPS model attempt to smear their critics

Trial by Error, Guest Post: Questions About Professor Sharpe’s ‘Special Ethics Seminar’

by Prof. Steven Lubet

http://www.virology.ws/2017/07/03/trial-by-error-guest-post-questions-about-professor-sharpes-special-ethics-seminar/

Information tribunal

http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen%20Mary%20University%20of%20London%20EA-2015-0269%20(12-8-16).PDF

The media

Examples of media response to publication of the PACE trial in 2011

Boseley S. Study finds therapy and exercise best for ME. The Guardian, 18 Feb 2011. https://www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment.

Daily Mail reporters. Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study. Daily Mail, 18 Feb 2011. http://www.dailymail.co.uk/health/a…s-exercise-best-hope-recovery-findsstudy.html.

Beckford M. Exercise and therapy can help ME sufferers, study claims. The Telegraph, 18 Feb 2011. https://www.telegraph.co.uk/news/he…herapy-can-help-MEsufferers-study-claims.html.

Media articles that criticise PACE and CBT/GET treatments

Rehmeyer J, Tuller D. Getting it wrong on chronic fatigue syndrome. New York Times, 18 Mar 2017. https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatiguesyndrome.html.

Duffy S. Will the UK establishment finally stop denying the reality of ME? Huffington Post, 2 Feb 2017. http://www.huffingtonpost.co.uk/dr-simonduffy/uk-establishment-me_b_18375968.html.

Whipple T. Scientists trade insults over myalgic encephalomyelitis (ME) study. The Times, 1 Aug 2017. https://www.thetimes.co.uk/article/…r-myalgic-encephalomyelitisme-study-slk0cv5lj.

Wright N. Time for Unrest: Why patients with ME are demanding justice. The Independent, 7 Jan 2018. http://www.independent.co.uk/news/l…-chronic-fatigue-illnessdisease-a8133616.html.

NICE Guidelines

United Kingdom National Institute for Health and Care Excellence. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. 2007. https://www.nice.org.uk/guidance/cg53.

United Kingdom National Institute for Health and Care Excellence, Centre for Clinical Practice. Review of Clinical Guideline (CG53) – Chronic fatigue syndrome/ myalgic encephalomyelitis. 2011. https://www.nice.org.uk/guidance/cg53/evidence/review-decision-2011-546258781.

USA CDC changes its guidelines

Stat News – Why did it take the CDC so long to reverse course on debunked treatments for chronic fatigue syndrome? By Julie Rehmeyer and David Tuller.  Sept. 2017 

https://www.statnews.com/2017/09/25/chronic-fatigue-syndrome-cdc/

ME Association: America calls for a cultural shift in the way care is offered to ME/CFS patients | 13 July 2018

http://www.meassociation.org.uk/2018/07/america-calls-for-a-cultural-shift-in-the-way-care-is-offered-to-me-cfs-patients-12-july-2018/

CDC Clinical care of patients with ME/CFS

https://www.cdc.gov/me-cfs/healthcare-providers/clinical-care-patients-mecfs/index.html

Evidence of harm caused by exercise therapies for ME/CFS

VanNess JM, Davenport TE, Snell CR et al. Letter to British Journal of Sports Medicine. Reproduced in Trial by Error: Letter to British Journal of Sports Medicine from CPET Experts. 2018.

http://www.virology.ws/2018/02/05/trial-by-error-letter-to-british-journal-of-sports-medicine-from-cpet-experts/

Workwell Foundation Letter for Healtcare Providers: ‘’Opposition to GET for ME/CFS.

http://www.workwellfoundation.org/wp-content/uploads/2018/05/MECFS-GET-Letter-to-Health-Care-Providers-v4-30-2.pdf

Kindlon T. Reporting of harms associated with graded exercise therapy and cognitive behavioural therapy in myalgic encephalomyelitis/chronic fatigue syndrome. Bulletin of the IACFS/ME. 2011;19:59–111.

Kindlon T. Do graded activity therapies cause harm in chronic fatigue syndrome? Journal of Health Psychology. 2017;22:1146–1154

ME Association. ME/CFS illness management survey results: No decisions about me without me. 2015. http://www.meassociation.org.uk/wpcontent/uploads/NO-DECISIONS-WITHOUTME-report.docx.

UK Parliamentary Debate about ME/CFS treatment and Research

Westminster Hall Debate 21st June 2018

Video of the debate

https://www.youtube.com/watch?v=mplieUzbOtQ

Hansard transcript of the debate.

https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch

Briefings to politicians before the debate

ME Action http://www.meaction.net/wp-content/uploads/2015/05/ME_Briefing_21_June_2018.pdf

Prof M. Sharpe (PACE researcher)

http://www.virology.ws/2018/07/02/trial-by-error-professor-sharpes-pre-hearing-briefing-for-monaghan/

Scottish Parliament

Petition to the Scottish Parliament

http://www.parliament.scot/GettingInvolved/Petitions/PE01690

Petition hearing   https://www.scottishparliament.tv/meeting/public-petitions-committee-june-7-2018?clip_start=10:10:46&clip_end=10:55:21

Evidence of the seriousness of ME/CFS

Kingdon CC, Bowman EW, Curran H et al. Functional status and well-being in people with myalgic encephalomyelitis/chronic fatigue syndrome compared with people with multiple sclerosis and healthy controls. PharmacoEconomics Open. 2018;2:1-12.

Documentary films

Voices from the Shadows

http://voicesfromtheshadowsfilm.co.uk/

Unrest

http://www.pbs.org/independentlens/films/unrest/

Books

A Girl Behind Dark Glasses by Jessica Taylor Bearman.  Autobiographical account of the experiences of a young woman with very severe ME and her 5 years in 3 different hospitals.

Psychology in Crisis by Brian Hughes.  Professor of Psychology describes the problems with psychology research, including a section on the PACE trial.

Podcasts

The ME Show – 10 episodes including an interview with Dr Charles Shepherd (Episode 3), Jane Colby on children with ME (Episode 4) and the author of this article (Episode 6).

https://www.meassociation.org.uk/podcast/

Biomedical Research – a summary

Maxmen A. A reboot for chronic fatigue syndrome research. Nature. 3 Jan 2018. https://www.nature.com/articles/d41586-017-08965-0.

Diagnosis and treatment guides for doctors

ME Association ‘Purple Book’

http://www.meassociation.org.uk/shop/books/

Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners 2012

http://www.njmecfsa.org/wp-content/uploads/2009/12/ICC-primer-2012.pdf

USA National Academy of Sciences, Engineering and Medicine, Health and Medicine Division.

‘’Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness’’, February 2015.  Includes report, diagnostic criteria and clinicians guide.

http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

CDC Information for Healthcare Providers.

https://www.cdc.gov/me-cfs/healthcare-providers/index.html

 

 

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24 Responses to This could happen to you.

  1. Beryl Dowling says:

    This a comprehensive and well written article which highlights how with no medical easily attached label to this condition it is left in a depressing limbo that is under researched and completely misunderstood. Let’s hope this so of information becomes much more widely read and acted upon

    Like

  2. Joy Boyd Colhoun says:

    Wow! This is an amazing read and ought to be read by every single person, especially those who work in the medical field! Thank you so much for the opportunity to read it myself and I will share immediately with all my family members and friends! It is somewhat difficult and stressful attempting to explain our illness! We feel a degree of embarrassment and that we are being silently accused of malingering and lacking the ability/will to “get on top of it and to accept that we are depressed etc etc!
    Thank you!

    Like

  3. Well done. Needs wide readership. Thank you!

    Like

  4. Anita Roddam says:

    This is beautifully clear. Thank you!
    This abuse, in the form of neglect and ‘gas-lighting’, has taken forty, (40!) years of my life.
    30 of those years in 100% bed-confined status.
    I, and hundreds of thousands, are missing from our lives.
    The U.K. government is ignoring a health crisis of epidemic proportions.
    #WeeksMissing

    Like

  5. Stephanie says:

    I broke down in tears reading ‘Scenario Two’. It’s hard to imagine a world in which that could exist for us, and yet, that is exactly what we need.

    This is an exceptionally well-written post. Thank you.

    Like

  6. Sue Cumming says:

    Once again Trish, I am left in awe of your ability to describe so vividly, succinctly and objectively the experience of living with ME. This is a devastating piece of writing, and needs to be read by as many people as possible, but especially by those in the medical professions. I almost dread to think how long this must have taken you to write and at what emotional and physical cost. I will certainly share it and urge people to read it, but I have such a tiny footprint on Facebook, I cant help thinking that there must ve a better way of getting this to a wider readership. Congratulations though, and thank you so much for your efforts and for sharing the results. See you soon x

    Like

  7. Karen Scott says:

    Superb explanation of what M.E. is, how the PACE trial was flawed and how it could be.

    Like

  8. Graham McPhee says:

    As others have said, this should be a compulsory read for anyone dealing with people who have ME and related conditions. Clear, comprehensive and compelling.

    Like

  9. tinagoddess says:

    As a parent my heart is broken as I read this. I grieve because I am unable to offer the kind of support I want to give my daughter, who is a parent, is a brilliant, focused PhD student, and suffering from ME/CFS/Endometriosis and associated issues. As her illness has progressed I have watched her university support dwindle with actual help she needs caught up in departmental politics, cultural barriers* and failure of her mentor to provide honest guidance creating isolation both mental and physical. Yet she perseveres, she does not give up. I am struggling with numerous health issues – many of which are ‘treated’ with IAPT, CBT, depression meds that (I believe) treat the wrong symptoms. Anything that can’t be easily explained is dropped into that pot and I understand how unhelpful that medical attitude can be. I feel as though the most difficult aspect of my ill health is the impatience and disbelief of my GP group. I very seldom see the same GP which makes it hard to create rapport and connection. I see my daughter go through this same problem continuously. This excellent article gave me another bit of hope for my daughter. ‘Scenario Two’ is something we all hope for – to be believed and given honest feedback in order to find the path to a better quality of life, even if total recovery may not be possible, the relief of being less anxious can make a world of difference in daily living. *(as an American in the UK cultural discrimination is a barrier to getting along in the workplace – I experienced this during my 12 years working for a company that discounted my suggestions and ideas out of hand; then when I encouraged my English co-worker to ask, well suddenly those weren’t half bad ideas AND were implemented. This is anecdotal I know but in conversations with people from other nations it is not that unusual. It was especially difficult in my early years in the UK when I accidentally stepped over invisible boundaries that set off a chain of resentment unknown to me. )

    Like

  10. This is so good, thank you. Going to daydream about scenario 2! Will be sharing. Please don’t interpret lack of words for lack of interest, dyslexia and ME are not a good combination at times!

    Like

  11. KathrynAnna says:

    Trish this is wonderful. Its moved me, and given me a way of explaining to those who are still sceptical.

    May I link to this from my own blog/Facebook page?

    Sending you good wishes.

    Like

  12. Anthony Carney says:

    Scenario ! looks very familiar.

    PERSONAL STORY (It might ring a few bells)
    In 2005 I developed glandular fever and a few bouts of shingles.Had I known of CFS and what was to follow I would have paid attention to some of the myriad symptoms that I experienced subsequently. Some were pressing..headaches, tiredness, the need to constrain activity, waking bathed in persperation ,inability to concentrate for long periods
    Not until June 2012 did things finally give out.

    In the six years since then I have sampled NHS treatments via my GP and the National Hospital for Integrated medicine. The GP deserves more sympathy than the latter. What a waste of resources.
    The team comprised a consultant,nurses,dietician,Occ. therapist, office staff all peddling CBT/GET.

    1.The exhausted patient heads up to central London after a 9 month post referral wait. He is taken on board and allocated an appointment with the Physio in 6 months. !5 months have elapsed.
    A 60 page questionnaire is handed over originating from QMC.I am invited to join the survey.

    So no help so far.

    2.I throw the survey in the bin assessing it as second rate social science bumf that will only benefit a few Phd students riding the CFS bandwagon down at Queens.

    3..Attend a few appointments spread six monthly over the next few years all of which related to GET and not any biomedical treatment .

    I asked the staff-Why don’t you organise patient meetings so we can assess treatments? They say good idea. Nothing happens.
    I asked the staff- Why don’t you organise gentle tai chi classes that patients can appreciate.They say good idea. Nothing happens.

    Three and a half years have passed.

    The moral in all this is that NHS treatments on the CBT/GET model are absolutely useless.even at the apex of the structure. The staff have no ideas, no expertise and more worryingly no real interest in their jobs.Apathy reigns at U

    The fact is that at 62 years of age I know in my bones that no effective treatments will be developed in my lifetime. CFS is with you for life. The MRC

    It’s important to be proactive but not Panglossian.

    1.Join a tai chi club. If anyone is interested I can point to a suite of 21 videos that break the long form down. You do them in your time in a place of your choosing.I can’t do strenuous exercise but the health not martial aspects are manageable.
    I am never free from shingles. There is always a vesicle or two lurking on the torso. It’s only alarming if it’s on your scalp or eyes.

    2.I can no longer read books-.too much energy required but AUDIBLE has thousands of texts to keep you going.

    3.Because of social withdrawl.-.its too much energy expended by meeting face to face with most friends and relatives get a dog.

    It’s a pleasure to care for another and takes one outside oneself. Alone mostly but not lonely.

    CFS effects who you are. You have to recognise it. I will never fully recover. So what can one do with the resources available? That’s the question.

    Of course many are not lucky enough to have enough cash to put financial concerns in the rear view mirror. Those are the patients that really have a problem

    If anyone wants help on the tai chi front let me know . I’ll follow this thread.

    ps What really annoyed me this week (and prompted me to look at this forum)was seeing the letter from Fiona Watt in the Times. She claimed that CFS was a priority for the MRC. I looked up their cash allocation in 2015-6 ..£287k and one thousand pounds less in the following year. They spend more on rubber bands up in Mill Hill.

    Like

    • trishrhymes says:

      Thank you for your comment, Anthony. I am sorry you had such a bad experience with NHS treatment – an all too familiar story. Hence my article.
      On the subject of recommending any activity, including Tai Chi. I am pleased for you that you find it helpful, and I’m sure your recommendation to try it is well-intentioned but I cannot endorse making such recommendations to others.
      I would emphatically warn people with ME against taking advice to try any activity like Tai Chi, yoga or Pilates. However gentle and however gradually introduced, any additional activity can cause serious setbacks. I have come across many stories of people encouraged to do one or other of these and being harmed. I myself had a significant setback from trying a super gentle version of pilates.
      So please, readers, if you want to know more about tai chi, I’m afraid I’m not going to host a discussion of it here.
      The forum Anthony mentions is Science for ME, an international forum run by and for people with ME, their carers and scientists. http://www.s4me.info

      Like

  13. Liesel says:

    I have tears in my eyes. Scenario 1 is all too real for me. I was diagnosed 24 years ago & was lucky that my GP at that time believed me & was supportive. I really didn’t realise how amazing he was. Changes in GP & later being diagnosed with degenerative disc disease & associated surgeries have brought me into contact with the medics in Scenario 1. Either they don’t understand/accept the condition or more significantly they choose to use it as a way of dismissing symptoms associated with my spine, instead saying it is the ME/CFS so are unwilling to do anything further, despite me knowing the difference. Trish, you are such a talented writer. Thank you for clearly explaining the flawed research & I so hope that this reaches a wide audience, especially the medical community.

    Like

  14. Anita Roddam says:

    Hi Trish.
    I think this piece is wonderful and I’m following the comments via email.
    I left a comment, probably on August 24th, which was “awaiting approval” last time I looked.
    Unfortunately, I kept no record of what I wrote.
    I can’t see it here and wonder if it was thought unsuitable?

    Warmest wishes, Anita Roddam

    Like

    • trishrhymes says:

      Hi Anita, Sincere apologies. I have found you comment and approved it. So sorry I missed it. Thank you for your kind comments. And much sympathy for your decades of suffering. Trish.

      Like

  15. trishrhymes says:

    To my readers. I have just done a slight edit to remove a few typos and surplus commas. I have also added a few references, specifically to a couple of good books, and some podcasts including one in which I am interviewed. https://www.meassociation.org.uk/podcast/ Episode 6.

    Like

  16. So very well written, Trish! Scenario 1 is heartbreaking and makes me angry that this is the reality we live in, scenario 2 sounds like a dream and I cannot wait for the day this becomes our reality instead! Thank you for the time and energy you put into this piece. Will be sharing and linking back. x

    Like

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  18. Lori says:

    A lot of this is right on and well explained. Thank you for that. But you are overlooking something crucial that explains your explanation, as it were. You go a bit awry early on by claiming that ME strikes “all… genders [sic] … indiscriminately.” This is not only untrue, but critical to understanding WHY the psychological model of ME took firm hold over the physical model. Women are vastly more likely to get ME, making it likely that there is some immune or autoimmune component to the illness (as with MS or Lupus, for example, which also strike women more often). It is well documented, if not well-understood, that women are more likely to get autoimmune disorders; our immune systems are more complex to enable us to carry and bear children.

    The driving force behind the adoption and tenacity of the psychological of ME is, purely, absolutely and entirely: sexism. That outbreak you mention was of nurses: women. Not just “staff,” but nurses specifically. That idea of “mass hysteria” would ONLY EVER be applied to women. The word “hysteria” itself describes a presumed *female* mental panic: “hysteria” is from the idea of a “wandering womb” which causes mental distress. Hysteria has the same root as hysterectomy: describing the uterus. The original idea of hysteria was that it was a female-specific madness caused by uterine problems. It became generalized to describe “female irrationality.” A group of women got sick? Of course it is hysteria, conversion disorder, or general female craziness. Of course.

    Female irrationality is the *default explanation.” Medical researchers will start there and, often, look no further.

    And that is why the psychological model stuck. The illness hits women more often. Women are “emotionally fragile,” “attention seeking,” ” unstable,” and “lazy.” If you examine the history of similar diseases, you will see the exact same paradigm popping up again and again. For decades, MS was described exactly the same way: conversion disorder and hysteria. It wasn’t until there was *undeniable proof* that MS was a physical disease (demyelination) that the “conversion disorder” label was dropped. Generations of women with MS were (also) treated as crazy.

    It is critical to understand the history of sexism in medical research and treatment to explain what went (and is going) wrong with ME. Ignoring the sex-based component doesn’t answer your real question of “why did this happen?” The move to a psych-based answer to an outbreak among women was not accidental or random. Why were psychologists even sent in to investigate? It was because the outbreak was among women. This also explains why Gulf War Syndrome, as a subtype of ME/CFS, was declared a physical disease much, much more quickly than other types have been.

    Ignoring both the medical sexism and the sex-linked nature of the disease, in fact, contributes to the problem. When we do not discuss these things, we are giving the strong impression that it is somehow shameful or questionable that women are more likely to get this disease. We are reinforcing the idea that women are not reliable reporters of our own experience by pretending that the disease does not strike us more often. Nor is it impolite to point out the very real and dangerous anti-female attitudes that medical practitioners have. Reporting on sexism is not bad. Sexism is bad.

    We will be living with this misdiagnosis for decades. Living – if we are lucky! Sexism kills.

    Like

    • trishrhymes says:

      Hi Lori, Thank you for your well argued comment, much of which I agree with. It is certainly true that ME, like many autoimmune and some other disorders strikes significantly more women than men, and that sexism played a very large part particularly in the early days of ME being mis-classified as psychosomatic, and characterized as ‘female hysteria’, and the repercussions of this still do a great deal of harm. To nitpick, when I listed the groups that can be struck ‘indiscriminately’, I intended it to mean, if you are female, it could happen to you, and if you are male it could happen to you. I was not intending it to be a statistical definition of equal likelihood, though I can see it can be read that way.

      Looking at the situation as it is in the UK at present, we still suffer from the legacy of that deeply sexist, even misogynistic characterisation of people with ME. However the picture is no longer as clear cut as that. In the area of research that continues into the now proven ineffective and harmful GET/CBT treatments, the current studies I’m aware of are led by women, including some appallingly unethical and unscientific studies of quack and damaging ‘therapies’ on children. And the doctors and scientists I could name who are helping us fight hardest against these studies and the CBT/GET based treatments are mostly men. I am deliberately not naming names here, but anyone up to date with current ME psychobabble treatments in the UK will know who I mean. In my own limited experience, and reading other people with ME’s stories about their experiences, there has been good and bad treatment from both genders of doctors, and men with ME are often dismissed as malingerers too.
      So yes, you are right, I should have included the hugely damaging effect of sexism, particularly in the historical part of my article. And it still affects us today, though the picture is more complex. The influence of large disability insurers and government welfare departments is probably even more damaging to us now, and is a big part of what makes the paradigm shift so hard to achieve.

      Like

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