“There is no therapy based on physical activity or exercise that is effective as a treatment or cure for ME/CFS”. NICE
Who would have thought? We knew that National Institute for Health and Care Excellence (NICE) – the executive branch in the U. responsible for producing treatment guidelines – was reconsidering its guidelines for ME (ME/CFS, chronic fatigue syndrome). Still, it came as a surprise when its draft guidance made explicit what people with ME/CFS have known for so long: that neither CBT nor graded exercise therapy (GET) is “a treatment or cure for ME/CFS”. NICE went on to say GET “should not be presumed to be safe for those with this disabling and often neglected illness.” (It also did not recommend the Lightning Process.)
NICE does not recommend GET or CBT as treatments for ME/CFS (anymore).
Plus, it finally, finally, put CBT into the context in which it should have been offered all along – as a “supportive psychological therapy which aims to improve wellbeing and quality of life”. That, CBT, when properly done, is certainly able to provide. Just don’t pretend it’s a treatment. (CBT was originally used in mood disorders but is now being used to assist with quality of life in many physiological disorders including heart disease, rheumatoid arthritis, multiple sclerosis, and cancer. )
One had the feeling that NICE was attempting to make up for past errors that have sidelined patients and their concerns and blunted their trust in the medical establishment. More severely ill patients have been particularly affected. The ME Association reported that Paul Barry, the Chair of the NICE group, singled out the more severely ill:
“This guideline reinforces the legitimacy of this biomedical disease and aims to reduce the disbelief and stigma felt by people with ME/CFS … It acknowledges the profound needs of people with severe ME/CFS and their carers whose lives are hugely impacted by ME/CFS, and states that this unique patient group should be treated with respect, dignity, and empathy.”
It appears to be a repudiation of the wrong-sighted and even, at times, cruel practices that have been foisted on ME patients in the UK for years. Of course, it’s too late for the people pushed to the edge and beyond by a system in denial.
The unremitting focus the UK and the Netherlands have had on GET has, of course, affected more than the patients in those countries. It’s cast a pall over the entire ME/CFS community and the field itself. Even in the U.S., where research efforts have remained overwhelmingly biological, the taint remained in the form of popular medical websites espousing these practices.
The Gist
- NICE provides treatment guidelines for the UK health system.
- In its recent draft guidance, NICE no longer recommends either graded exercise therapy (GET) nor cognitive behavioral therapy (CBT) as treatments for ME/CFS. NICE could not say that GET was safe for people with ME/CFS.
- Instead of being seen as a treatment, it recommended that CBT be seen as an option for those wishing to use it to improve their quality of life.
- NICE stated that neither exercise nor CBT are cures for ME/CFS – and noted there are no cures.
- NICE acknowledged the distress that many patients have experienced and called for better training and support from the medical profession.
- The draft document is long and covers diagnosis and other facets of ME/CFS. Expect more complete analyses in the days ahead from the ME Association, David Tuller, ME Action and others.
- With CBT and/or GET getting the thumbs down from the CDC, the Dutch Health Council, the Mayo Clinic and now NICE, the biopsychosocial approach to ME/CFS appears to be winding down.
Ironically, given that these programs were largely developed by psychologists – the psychological cost to the ME/CFS community has been huge. It’s not just the disbelief that patients encountered amongst doctors and friends or the worsened health outcomes or lost opportunities.
There’s also been the loss of faith in the medical community itself. How is it that it could put so much emphasis for so long on practices that were so at odds with patients’ experience? Who among us, after all, did not wreck ourselves physically trying to maintain our careers and lifestyles? Who among us did has not tried again and again and again to “exercise”?
To their credit, the NICE authors began to acknowledge some of the harm that’s been done:
“Health professionals should also recognize that people with ME/CFS may feel wary of trusting them if they have encountered doubt about their symptoms and condition.
ME/CFS can cause profound, long-term illness and disability, and much of the distress surrounding it is caused by difficulties in recognizing, acknowledging, and accepting the condition and its impact.
(The) controversy over the use of graded exercise therapy and CBT that has served only to alienate many people with ME/CFS and in some cases undermine the confidence of those caring for them.”
Beginnings
It’s a big change for NICE in particular. GET for ME/CFS, after all, was basically borne in the UK. A search of PubMed indicated that London researcher Peter White led the first GET M.E. trial in 1997. That first trial set the stage for the controversies that were going to embroil GET and ME/CFS for over 2 decades – and which finally culminated in NICE not recommending it as a treatment for ME.
It provoked 4 published dissenting comments, including one by Charles Shepherd, which began by stating that:
“We remain firmly opposed to exercise programmes that encourage patients with the chronic fatigue syndrome to increase their levels of physical activity progressively without making allowance for fluctuating levels of disablement”. Shepherd went on to comment why, if the program was such a success, no increases in either peak oxygen consumption or muscle strength were seen.”
So it went for the next couple of decades. Biopsychosocial researchers presented sometimes garbled and misleading results, while patients, researchers, and academics pushed back.
Large overviews of GET studies suggested it wasn’t very helpful.
There’s always been a corrective to the graded exercise therapy (GET) mania that gripped institutional funders in the UK and the Netherlands for so long. It was called research. It’s not that GET research has been particularly good. David Tuller, a thorn in the side of the CBT/GET crowd, has repeatedly exposed problems in the biopsychosocial (BPS) research done in Europe.
Plus, there were the shenanigans that took place in the huge PACE CBT/GET trial. It was notable that even when the researchers lowered the bar to recovery so completely as to make it possible to enter the trial “already recovered” – even then – the best the PACE trial could conclude was that CBT/GET could “moderately improve” outcomes.
That was actually quite an overstatement. The trial was so poorly done that the Journal of Health Psychology – in what was surely a first – devoted an entire issue to problems found in the trial. A re-analysis of the trial data using the original criteria suggested that it completely failed. Later, the best the authors of the large 2017 GETSET trial could muster up was “it might reduce fatigue”.
The vaunted Cochrane reports didn’t have that much good to say about GET either. The 2019 review of GET studies (containing over 1,500 participants) concluded that exercise therapy “may slightly improve” physical functioning, depression, and sleep compared to adaptive pacing (low-certainty evidence). The authors were also “uncertain if exercise therapy….reduces fatigue”. An earlier Cochrane report stated that “little or no difference in physical functioning, depression, anxiety and sleep” was seen.
Even that may have been an overstatement. Mark Vink and Alexandra Vink-Niese re-analyzed the GET studies used in the Cochrane review, and concluded that the Cochrane conclusions were wrong and that studies actually suggested that GET was completely “ineffective”.
Dr. Alastair Miller’s take on the NICE’s GET turnabout was that NICE had succumbed to political pressure – but maybe NICE was just following the science. Perhaps NICE thought one could reasonably expect that two decades of work and millions of dollars spent should result in something better than “may slightly improve” physical functioning and “little or no difference in physical functioning”.
In the end, it’s no wonder NICE is turning its back on GET – GET’s return on investment has been atrocious. The wonder is that took it so long.
In truth, NICE is a bit late to the game. NICE’s new recommendation is just the latest blow to the biopsychosocial approach to ME/CFS. The U.S. dropped the first bomb on CBT/GET when a re-analysis by the U.S. Agency for Healthcare Research and Quality (AHRQ) of CBT/GET studies left it unable to recommend them for ME/CFS. That prompted the Centers for Disease Control to remove its recommendations for CBT/GET from its website.
Then, the Dutch Health Council – hailing from one of the centers of the biopsychosocial movement – recommended that GET not be used to treat ME/CFS. Then, just this year after receiving a call from Vicki Whittemore of the NIH, and Elizabeth Unger of the CDC (and work from many advocates – read more here from MEAction), the Mayo Clinic removed recommendations for CBT/GET from their website.
CBT and GET’s time has been coming for years.
Other Research
Meanwhile, research has more and more uncovered evidence of a metabolic breakdown in ME/CFS.
As GET’s allure has been fading, research findings elsewhere have been steadily undermining its premise – that deconditioning was keeping people with chronic fatigue syndrome (ME/CFS) down. It’s not that deconditioning is not present in some people with ME/CFS – of course it is. Deconditioning will occur in anyone who is bedridden for a period of time.
GET practitioners, though, proposed that deconditioning was behind ME/CFS patients’ inability to exercise. If that was true, then a slow ramp-up of exercise (i.e. a graded exercise protocol) was just the ticket.
In 2018, though, a Visser/Van Campen/Rowe study definitively demonstrated that not only was deconditioning not causing the energy production problems in ME/CFS – it didn’t even appear to be impacting them.
The study found everyone in ME/CFS – whether they were deconditioned or not – had the same impaired stroke volume. Since it was reduced stroke volume that was supposedly signaling that deconditioning was present, that finding blew apart the deconditioning hypothesis. The Visser study indicated that the core energy production problems in ME/CFS had to come from somewhere else.
Meanwhile, more and more studies have continued to establish that energy production is indeed impaired in ME/CFS. From Workwell’s two-day cardiopulmonary exercise test (CPET) studies to Systrom’s invasive exercise studies, every year more and more evidence of an energetic breakdown in ME/CFS has accumulated. A recently published study was even able to predict – using biological factors – which patients dropped out of a GET study. (Half the patients dropped out.) Just last month, a small Cara Tomas study found that ME/CFS patients’ muscle cells were less able to use their main energy source – glucose.
The evidence that something with the energy metabolism has gone wrong – something which no GET protocol could fix – has been building and building and building.
The Evidence Base Issue
Proponents of GET will say that whatever its mediocre results, CBT/GET are still the only “evidence-based” treatment for ME/CFS. There’s a reason for that, though – a gross inequity in funding. The reason that CBT/GET has dominated treatment recommendations on medical websites is simply that they’ve been funded to an extraordinary degree. CBT/GET are two of the few treatment options that have been significantly investigated in ME/CFS.
With CBT/GET getting the vast majority of clinical trial funding, it was no wonder they dominated treatment options in many places.
A three-year PubMed survey of treatment trials in ME/CFS dating from 2015 indicated that 69% of them, and two-thirds of them from the UK and the Netherlands, involved behavioral treatments.
The average size of the 11 CBT and/or GET trials produced by the two major CBT/GET researchers (Chalder, Bleijenberg) was 367 participants. Only two of the six ME/CFS drug trials done during that time span had over 30 participants, and two had less than five (!).
That’s the kind of inequity that occurs when federal governments decide to put their resources behind one particular treatment option.
The fact is that the treatment options available for people with ME/CFS – particularly in the UK and Europe – are not a function of the treatment possibilities present. Rather, they’re more a function of the treatments that have been supported by federal institutions.
With its immense federal medical funding apparatus, the U.S. of course, could have been a corrective. It has, after all, been focused almost entirely on biological studies. The NIH’s high bar to treatment trial funding and its laissez-faire approach to medical funding overall has left it, though, on the sidelines as CBT/GET dominated the treatment picture in ME/CFS.
Is the Biopsychosocial Approach to ME/CFS Dead?
The NICE draft guidance document is large and covers diagnosis and other issues. It will take time to unpack. Plus, it’s a draft document and could be changed. David Tuller has noted that substantial pushback is already beginning to emerge. Look for future analyses from the ME Association, David Tuller, and ME Action in the future.
With the CDC, the Dutch Health Council, and now the NICE draft document giving GET a thumbs down and relegating CBT to a supportive, elective aid, though, the biopsychosocial movement has been dealt some big body blows lately. Is it winding to a close? Time will tell, but it’s hard to imagine funders throwing much more money down the CBT/GET rabbit hole after this.
One hopes that the institutional funders in the U.K. have given up on there being an easy way out for ME/CFS, and are willing to knuckle down and get to work puzzling out the pathophysiology. Certainly, the UK has a strong bench of excellent researchers that could be funded.
It’s notable that NICE is embracing an approach to exercise that has held sway in the U.S. for years. Instead of trying to push out of one’s energy envelope, it recommends staying in it. Exercise can be helpful for some, but it must be managed carefully. NICE recommends that physical or occupational therapists with expertise in ME/CFS guide exercise protocols.
The U.S. approach, ironically, is more “research-based” in that it often relies on using exercise test results to assess cardiovascular functioning and determine acceptable exercise levels. It bears noticing that the first GET trial in 1997 may have been the first and last GET trial to employ exercise testing and physiological measures like oxygen consumption. Contrast that with the numerous studies and presentations from exercise physiologists like the folks at Workwell, which embrace and use physiological measures to produce scientifically guided exercise programs for ME/CFS patients.
NICE would be smart to – if it hasn’t already, refer physical therapists to an award-winning model of ME/CFS (“Conceptual Model for Physical Therapist Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis“), put together by Todd Davenport and the exercise physiologists at Workwell, which uses a heart rate-based approach to activity management.
Other helpful published reports include Workwell’s “A Realistic Approach to Exercise for CFS Patients” and numerous presentations on their website including Mark VanNess’s 2-hour 2016 presentation, “Expanding Physical Capacity in ME/CFS”.
No one has missed the fact that this turnaround comes at a most opportune time for the thousands of long haulers that are starting to hit the UK’s medical system. Long haulers and ME/CFS patients everywhere should know that cardiovascular exercise testing provides a gold standard – in fact the only gold standard – for those ill enough to need to get disability.
One big question is what’s next for ME/CFS patients in the UK given the close embrace its national health system has given GET over the years. It’s got some catching up to do. The ME Association reported that Paul Barry stated that NICE:
“recognizes the pressing need for training and education for health and social care practitioners in this neglected field.”
Given the stories that have come out of the UK, nothing could be more true.
Check out the latest:
In consideration of the immense harms to patients propagated by the guidance this revision replaces, it is incomplete without a complete and public apology from NICE.
Also, I recognize many people in the ME community worked very hard for many years to convince the UK how wrong their previous guidance was, but I believe we should nickname this the Robert Courtney Correction (or something like that), in honour of someone who spent precious energy and time fighting their guidance and whom ultimately was failed in the most tragic way by NICE’s wrongheaded approach.
Cort included (in a link in his article) a heartfelt tribute from his friends to Bob, his Phoenix Rising Forums name: https://forums.phoenixrising.me/threads/in-memory-of-bob-a-tribute-from-his-friends.58180/
Thank you for reporting on this Cort, it is long overdue but extremely welcome.
Where I live in the south of England, the only treatment available is CBT, nothing else and it is a national disgrace. The question is, what will they or can they offer us as a treatment ?
That is a great question!
Our late great Suffolk & Norfolk ME champion, Dr. Terry Mitchel,l refined his approach to serving his patients for 3 decades. I believe he said it was about what not to do as much as any aggressive intervention;this approach bourne out of years of sensitive keen clinical observation and working with thel patient.
As an NHS consultant haematologist, for many years he had prescribing rights until beancounters in the ocal health authority removed both that right and a significant amount of his ring fenced regional c,inical champion 2004 DoT service development grant.
The current skeleton of a community service has been manipulated by the said provide and ‘Social Enterprise’ senior management team – which is a divested arrangement in essence, privitised service delivery by the back door.
The public are excluded from attending any of their high level disission making or allowing FOI!
They are in effect unaccountable except to Companies House!
So in the UK we have a conundrum.
The specialist teams described by NICE as the way forward, have their own set up effectively outside of any mechanism or framework which might be used to deliver what NICE may recommend next year.
NICE can lead Clinical Commissiong Groups and Strategic Alliance and ‘Transformation’ horses to the water trough, but neigh, can’t make them drink!
As Professor Jonathan Edwards has recently stated, the existing arrangements and teams may need dismantling first.
Or at least the community teams need relegating to a supportive role with decision making about service provision and direction reinstated in specialist hospital outpatient settings with Department of Health direct grants and new funding.
In 2004 this was what was proposed in the rollout of specilist services under the Long Term Conitions Framework.
It is not rocket science but it needs political will to make it happen.
I am not optimistic in the current political climate or with current administration.
I am taking Naltrexone and after building up the dose very slowly I am now able to do a little work for the first time in sixteen years.
Also, thank you for such a fulsome explanation (as always) of this major problem ME patients have faced for decades, Cort! 🙂
This is from Waiting. (Her comment got munched up by the software…)
In consideration of the immense harms to patients propagated by the guidance this revision replaces, it is incomplete without a complete and public apology from NICE.
Also, I recognize many people in the ME community worked very hard for many years to convince the UK how wrong their previous guidance was, but I believe we should nickname this the Robert Courtney Correction (or something like that), in honour of someone who spent precious energy and time fighting their guidance and whom ultimately was failed in the most tragic way by NICE’s wrongheaded approach.
Cort included (in a link in his article) a heartfelt tribute from his friends to Bob, his Phoenix Rising Forums name: https://forums.phoenixrising.me/threads/in-memory-of-bob-a-tribute-from-his-friends.58180/
It’s about time! Sweet vindication!
I hope that every person who now gets told to practice GET for ME/CFS should stand up to their doctor and tell them, “You are wrong.’
Some of my practitioners know me as the ‘patient from hell’ for back talking conclusions/treatments which I think are inaccurate. And I am always prepared to back up my beliefs with plenty of peer reviewed documentation.
Sometimes ‘the devil is in the details’ as with combating de-conditioning vs. the harm that can come from transgressing one’s energy boundaries with ME/CFS–and as you pointed out, that should be taken into consideration.
As far as mis-applied therapies, for the people with autonomic conditions such as hyper-POTS, doctors also should realize that many patients do not so much suffer from an anxiety disorder, but have fallen prey to their body’s malfunctioning. Giving them psychiatric anti-anxiety medication may not be the proper treatment.
Cort, I agree that the money and publicity can bend treatment trends–for example cancer. I’m sure there may be other ways to treat it (such as electromagnetic models)–but the money is mostly stuck in various toxic chemotherapies.
I am very happy at this news and next is to get more research time and money for us!
‘Some of my practitioners know me as the “patient from hell” for back talking conclusions/treatments which I think are inaccurate.’
Oh Nancy 🙂 Have some of the medical profession lost their way, or what…? I even heard someone recently say that they were having difficulty finding a doctor who was (wait for it) WILLING – to work with them. I think the medical have become a little bit precious, can have far too much power and appear to believe they are unaccountable to their vulnerable patients.
I believe the whole practitioner/patient relationship needs to be revamped. I would like to see more of a collaborative partnership be developed, in which the ‘patients’ own resources are encouraged and welcomed and then doctors can bring their own knowledge and experience too.
medical profession
The only profession I know who gets paid even when they are wrong or simply look at your pile of all the tests and takes them 5 minutes you need to seek psychiatric help. But they ask you to pay their hefty fees as specialist.
I Ask of patients to name the Doctors. I have burned my retirement on doctors who needed special tests to be done in only one special lab, and …..of course, none of it covered by insurance
Thank you Cort!
I like that word “pushback”. I have already seen posts by Wessely, Chalder and P D White, saying in effect that NICE was making a mistake by rejecting their work. All 3 seem unwilling to face facts and see that they were wrong all along. They were destructive to patients, but never will admit it. Acting like bad politicians.
Great news, Cort. Why has it taken them so long? Speaking of losing faith in the medical community, despite being a registered nurse, I lost faith in them decades ago. I was appalled to find out that despite trigger points, with their effect on the autonomic system, being able to cause just about every symptom the human body may have, that doctors would just ignore that and go straight for a more serious diagnosis. They should first be ruling out trigger points as the cause of the symptoms.
I am relieved to see this development and it is clearly of even greater significance and urgency for the health and safety of those with severe ME /chronic fatigue, but will be a relief for all.
I was sent to a NHS Pain Clinic here in England 2 years ago after 7 years of Chronic migraine, secondary fibromyalgia and chronic fatigue (moderate). In the ‘induction meeting’ (for no specific illness, just 30 or so patients crammed into a room feeling like naughty schoolchildren) it was clear that the psychologists leading it put the whole rooms pain experience down to a lack of exercise and ‘will’.
I left feeling incredibly angry after a psychologist told a woman, who he clearly had no sight of her medical records or history ‘whatever exercise you do, you can do more’. GET and CBT were the name of the game, the magic answer to everyone with pain, regardless of what the cause was.
I made a complaint to the director of the pain clinic about this psychologists comment. It was irresponsible, dangerous and invalidating. In fact reckless and damaging.They apologised and I never went back and told them I never would. I reminded them that such an approach and comment was also completely inappropriate for individuals with my combined health issues.
No wonder we feel the need for emotional help. I never went back. I have had major surgery for cancer since and have been keen to build back to my precarious pre op state of mobility, trying to walk more steps, keep mobile as best I can. Apart from the odd miracle day, I am left exhausted, in more pain,near to breakdown the more I push myself. It is the most awful thing.
Last, but not least, thank you Cort for your continuing excellent analysis and sharing of information. I have been reading for ages, but this is my first comment.
Annie – good to hear from you and with such a poignant comment. Thanks for sharing your experience. I’m sorry it was since a negative one but it’s people lie you Anne, people who stood up and made their voices heard again and again and again, that made this change at NICE possible. Speak back to the white coats is not easy. It’s takes guts. This is your win! ….
And here you are post a major surgery – in pain, and working to try to get back to where you were. This is what I don’t get about the whole CBT/GET thing. It’s not like we all just took to bed one day. We all tried so damn hard! We practically broke ourselves – and some did break themselves – trying to be what we were. Who gives up exercise, careers, relationships, paychecks, status….easily? I LOVED to exercise. You didn’t have to ask me to do it. I looked forward to it….
What a disconnect!
Thank goodness for that!
Never mind GET, a 12 week CBT course left me so much worse, and traumatised by the sense of trying to mould myself into the uncomfortably rigid cookie-cutter shape that was expected rather than the natural realistic-human shape I am. I persisted through to the end of the 12 weeks because if I hadn’t I would have been told I hadn’t given it a chance. And I was desperate. It took me well over a year to recover from it, and seven years later I’m still left with a degree of PTSD. (Although mindful meditation helps with that! Oh, the irony. )
While I’m sure us humans are capable of controlling far more of our physiology with our conscious minds than we realise — long term mediators like Buddhist monks illustrate this capacity — expecting the majority of us to be able to influence our physical functioning to such a degree is like suggesting that since some people can get PhD’s in nuclear physics, so can people in junior school; and if they haven’t achieved it yet they’re just not trying hard enough, clearly don’t want it bad enough, or are simply pathetic.
I’m so glad that more and more mainstream western medical science is acknowledging the fundamental interconnectedness of our bodies and minds; enough of this limiting “it’s all in your head”, or “it’s purely physiological” non-sense — it’s impossible for one to be affected without the other also being affected — it’s long past time for us to work with our being as the whole inextricably connected mish-mash it is.
Hi Andy,
I had an extremely damaging encounter with a psychotherapist in 2007. I became unwell in 2007. It’s taken me 13 years to regain a good bit of my health with a very steep descent a few years ago and 13 years and 4 official complaints to challenge the psychotherapist and what they were doing.
To entertain myself and to try and deal with the feelings this situation brings up in me I just think – what do you end up with if you take the ‘therapist’ part away from the word psychotherapist? You are left with a psycho…
!….That guy (if it was a guy) must have been really been something Tracey given how strong and mindful you are….
Yeah really! It took me years to work out what had happened. First take a person (me) and deliberately use very unusual methods to psychologically regress them to who knows where, then leave them there and criticise and exclude them (it happened in a group setting) for going there and then dominate them into submission when they (me) challenged what they were doing.
Then nobody would help me and the more I complained the more trouble I was in and the more excluded I became. The problem was ‘all in my head’ apparently. Sound familiar?
Oh, but it wasn’t (all in my head) you see because they (she) really shouldn’t have been doing any of it. It’s such a big deal for me and quite obviously nobody has understood what I have been talking about. I’ve tried explaining to people – it generally doesn’t go well, so I’ve given up talking about it. I’m currently waiting for a decision on my complaint and mulling over the remnants of my life 🙂
So the two issues have been running concurrently and intertwined for 13 years. Both have taken me to the very edge of my existence. But what gave me strength was to just stick with telling my experience, as it happened, in all it’s muddlyness.
I’m a bit overwhelmed by the significance of the NICE draft guidelines. And I feel so sad for all those people who aren’t still with us, for whatever reason. From what I understand, the draft NICE guidelines are heading in a different and better direction.
Here in Ireland I presume they’ve been waiting to see what NICE decided, before continuing to proceed with their own Working Group and their subsequent decision on ME/CFS.
I feel there are so many people working together all over the world on ME/CFS and as barriers are dismantled, more positive outcomes may be achieved. It comes down to sustainable funding now, doesn’t it? And I think on a personal level, somehow managing to hang in there, whilst it all seems to take so long.
(PS. The above psychologically traumatic episode occurred on a counselling and psychotherapy training course! Yikes!)
Thanks so much for this, Cort. I have had ME since 1983, and have never been persuaded to try GET/CBT but knowing you have a serious disease that is not believed in by so much of the medical profession and hence the general public is a big psychological burden on top of coping with the disease itself.
It is too much to hope for an apology from NICE. but one would like to think they feel some guilt which will spur them into putting more money into real research and teaching medical students about ME. My son trained to be a doctor a few years ago at Oxford University and found ME was dismissed as a joke.
I totally agree with you Joyce – I found the disrespect and disregard for my lived experience extremely stifling and oppressive. In fact, over my lifetime I’d say that doctors are people I would least like to be in a room with. To be talking to another person, whilst being fully aware that they are dismissing everything you are saying is, I find, deeply distressing. They have their own agenda and they have the power.
My sister has a close friend, who’s a doctor. I have a horrible feeling that might have been where my sister was getting her information from – she spent a good while persecuting me to the point that I had no communication with her for years, for my own mental health. I live in Ireland, they’re in the UK.
The timing of this is so important. As horrendous as the history of CBT/GET has been for the ME/CFS community, things would otherwise be about to get a whole lot worse when considering the incredibly large number of COVID-19 long haulers looking for advice.
I remember that Ron Davis gave an introduction at the Australian EMERGE conference where he pointed out how hopeless a case it was convincing the Australian “medical establishment” (I’m not sure which group he was referring to) that exercise would never work for ME/CFS.
When addressing long COVID, the RACGP website now contains warnings about GET/CBT not working for ME/CFS. That’s great. However, other GET/CBT information for ME/CFS on the RACGP website is still dangerously incorrect. In addressing adverse affects of the protocol it is stated that:
“Surveys by patient groups of their members have suggested that GET may be harmful to some people with CFS. However, this finding is believed to be due to inappropriately planned or progressed exercise programs, possibly undertaken independently or under supervision from a person without appropriate experience.”
Appropriate experience in Kool-Aid consumption perhaps. Is that a good metaphor when it is the patient and not the supervisor that gets sick – probably not. Regardless, here’s to hoping the usual GET/CBT stooges cannot do any further harm peddling their BS.
Dr. Bateman has said the researchers are easy to convince! It’s the doctors that are so difficult. Boy that statement you underlined is so at odds with the NICE draft report.
I don’t know if CBT/GET is over – but man it’s taken some hits lately.
This is the beginning of the end for CBT / GET. There will still be resistance. It’s about money, career and big egos.
Here Cort a new test for ME/CFS ?
https://www.nature.com/articles/s41598-020-76438-y
Thanks Gijs. It looks like Alain Moreau did a good one. Looking forward to checking it out
Gijs, thank you!
How exciting to have such timely success by Alain and all, at the same time as NICE’s turn-a-bout.
Between Alain’s markers—and as such a CFS test, and potential news coming in December from Bbupesh Prusty, 2021 may truly be the ‘ME’ year!!
a simplified explanation of Alain’s findings are at
“Research News: Canadian Scientist identify 11 MicroRNA’s that can be used as biomarkers for Chronic Fatigue Syndrome”
on Thailand Medical News website
@Gijs,
What a great article! Not only might it be a potential good test for ME/CFS, but it might suggest that mysterious plasma factor which seems to switch energy production on and off.
Thank you for posting this!
Thanks for sharing this excellent, long overdue news, Cort.
I read less than two months ago this letter to the British Medical Journal, “From doctors as patients: a manifesto for tackling persisting symptoms of covid-19” (https://www.bmj.com/content/370/bmj.m3565).
For decades, doctors (specifically in the UK) have dismissed, demeaned, ridiculed, and even abused patients. Patients groups shouted for years the so-called “treatments” made them even sicker (with all the human and financial consequences that it involves). No one listened. Medical authorities made sure no money was allocated to the search of biological causes of the illness. The word ‘prevention’ was never even pronounced. Doctors enforcing the psychosocial narrative of the ‘disorder’ were called “experts”, whereas doctors trying to point to the 8,000 studies showing biological anomalies of the disease were called “activists”.
That was then.
Then Covid-19 enters, and decimates doctors and nurses, leaving them with bone-crushing fatigue, brain fog, post-exertional malaise and pain. Ironically, the very ones who, as a group, denied ME/CFS patients the most basic respect.
And what did I read in their letter? I read things like “Covid-19 should be dealt with using a scientific methodology and without bias”, “Before any active rehabilitation can start, organic pathology needs to be detected and managed with appropriate investigations”, “Before we get people exercising, it’s important to be sure that it’s going to be safe. We need proper evaluation of cardiac and respiratory function, and we need to take things slowly and in a paced measure”, “A reliance on “one size fits all” online rehabilitation services risks serious harm to patients if pathology goes undetected”, “Patients must be involved in the commissioning of clinical services and the design of research studies”.
Wow. Just wow. What a change of paradigm…
Let’s read that sentence again, “Before we get people exercising, it’s important to be sure that it’s going to be safe. We need proper evaluation of cardiac and respiratory function, and we need to take things slowly and in a paced measure”…
Isn’t it amazing?
Doctors did nothing except sticking their fingers in their ears and doing the lala sound. Had they taken the ME community more seriously over the last 40 years, research would have progressed much faster and perhaps a treatment would have been available today.
I guess this retraction of GET/CBT is the first step of the big awakening of the medical establishment. It took less than two months between the letter to the BMJ and the change in NICE guidelines. It shows these people are in fact capable of doing things. The difference today is that they want to.
Thank you so much Isa,
That is an incredible change! This is a paradigm shift – from assuming a psychological source when dealing with the fatigue and problems of a post-infectious illnesses to being sure to assess physiology first. You know what? We lead the way with that. We’ve been the pioneers marching through the desolate wastelands blazing a trail. It’s rough, for sure. We may not see the end in sight or the difference we’re making but that’s what it is be a pioneer. It’s part of the process. The obstacles are huge and you just keep working and working and working. Building the foundation. Eventually getting there.
Without the exercise studies done by Workwell, Betsy Keller, David Systrom and quite a few others – I don’t think those things could have be written.
I still remember looking at an amazing abstract at the San Francisco IACFS/ME Conference it must have been six or eight years ago. The implications were mind-boggling. It was by someone I had never heard of – David Systrom – he sent a young graduate student along with it. He had been watching this field! Now he’s fully embedded in it.
I think there are many more David Systrom’s out there….
one thing that is amazing is that those in the letter do not seem to mention cfs/me—as if they distance themselves from the stigma attached to cfs/me
perhaps they want some “new” disease, particularly not cfs/me…………….because they want a disease that is not already “discounted” by their own colleagues??
perhaps i read to much into it 🙁
I see what you’re getting at sunie. My first reaction when reading the letter from the doctors to the BMJ was – Well these are proper people, people of status in the community, who have a real disease, that everyone’s heard of, and so obviously require and deserve well informed healthcare interventions and the minimising of risk of further damage to their health and wellbeing.
I’ve read it a few times now and they do seem to be very keen on patient involvement and If I park my initial fury at the many injustices faced by ME/CFS patients at the hands of the medical profession over decades, I can see that their letter focusing on their experience is authentic to them. The ME/CFS community also have their own individual authentic experiences but they just haven’t been fully listened to. They, the doctors have power – we don’t have so much. They still have enough self esteem, confidence and the belief that they have something to say that’s worth listening to. Being unwell with ME/CFS – being discarded, disbelieved and dismissed for years is absolutely exhausting, frightening, draining and miserable and has left me feeling I don’t have a voice.
I feel that pressure needs to be kept up to raise the profile of those with ME/CFS and we need to be heard in our own right, with dignity and a bit of respect 🙂
That’s not really true about not having a voice because Cort gives me/us an opportunity to voice my/our thoughts/feelings/experiences and scientific knowledge (if we have some – I don’t!) – so Thank You Cort 🙂
Also thanks Isa 🙂 it’s a very interesting and powerful letter.
Dr Charles Shepherd wasn’t one of the dissenting voices. I think you should correct that.
Oops, my bad. I didn’t follow the link and thought you were referring to the dissenting voices with regard to the NICE guidelines.
thanks Tracey Anne for your thoughtful reply
It’s about time!!! How many of us have been “harmed” by graded exercise and CBT!!! It would be great if more money could be thrown to ME/CFS/CFIDS, but it is difficult to get out and be vocal when we have no energy to do so! Thanks for the article!
Yes – that’s quite a barrier. It’s not like with AIDS and Act up where there was this huge and healthy part of the community that knew there was this train rolling down the tracks at them. They hit the streets with a vengeance. We’re different. Act Up is not a good model for us.
I would imagine that research funding by the institutions in the UK is going to trend more and more physiological – as it has been I believe. Hopefully groups like ME Research UK which funds ME/CFS research will get some more money thrown at them…
Oh Cort, finally!!! Thank you, thank you. Tears of relief and joy at this news. Now to get this to all doctors, psychologists, psychiatrists, therapists, etc… I wish it were all in my head, at least then I could get rid of it! Who wants to be like this?!!!
I don’t want to rain on anyone’s parade, but you have no idea how these people can twist the meaning of things. I should know. I’m currently in a U.K. hospital (3 months- no visitors -open ward)) severely ill. Weight wise (due to significant pain eating and swallowing )my life was deemed at risk. I am in the kind of pain reported by Merryn Croft and Sofia Mirza. I tried to refer to the changes to no avail. They still 100% believe and push deconditioning) and say that the newspapers have misinterpreted the new guidelines.
I was given a programme. Sit with bed inclined 1 min day 1, 2 min day 2 etc. Leg exercises in the morning. rest in between (they think the rest is ‘pacing’. I scream and jerk and have bruises from gripping the rail in pain. I am doubly incontinent. Have suffered fecal impaction because my bowel stopped working. They say it doesn’t work because of deconditioning.
I am told that I need to breathe deeply and find ‘pleasure’ in life by watching a boxed set. I can’t talk to home much as pain too much to speak. How do I breathe deeply when my head is being crushed and pain too great to hold onto pillow. If I move my bp can drop to 80/40, I am told I need to move more regularly to build it up.
Every pain med makes it worse (which they don’t believe’.) They now want to give me 25000 units of vit d when I can’t tolerate 1 small over the counter vitamin.
They have ignored virtually all of its recommendations so far. They now say ‘I don’t have to move if I don’t want to’ but if I don’t I will never walk again. Now I have stopped moving because I can’t take the pain. Nurses ignore me. Are rough with me. They take BP etc. Change me. Otherwise no interaction. All they say is do you want paracetamol or offer meds I have reacted to. My husband has told them again and again that I can’t tolerate lots of specialists on one day. Still they come.
A psychiatrist recommended I must be allowed one visitor, covid notwithstanding. They ignored that.
Every recommendation in that document was sent in at the start using information from charities – all ignored.
I have ‘false illness beliefs’ because I quote new interventions from America like MCAS. All of this makes me desperate for a way out. The psychological distress from being isolated for my ‘non-compliance’ and being told of course you will get better if you do as we say is unbearable I was told 99% of people get better.
Most of all the pain. The soul destroying, relentless siege from pain I experience every waking minute with no way out is indescribable. The fear as it reaches new lows each day.
I hope they will be forced to change. That will deal with the psychological pain from disbelief- but sadly not my daily living death.
ps I have an expert in me/cfs fighting for me on the outside but they block all attempts to help me.
I’m sorry to hear the pain you have to suffer during the last death strugle of this poison theraphy.
Do not doubt about your sanity. It is theirs that fails, not yours. They know, you know, we all know there is no way they can ever present audited data about their 99% of people getting better claim. Without it, claiming such is nothing but fraud.
Don’t allow that to ever doubt your sanity nor your true desire to do all WHAT ACTUALLY HELPS to improve your health.
Hang in there and hug.
It took everything I had to write that pushing through the pain, but people should know , it will take more than a government approved gap to change things
Wow Eva, that’s so horrible for you. Can someone like the ME/CFS expert get in touch with MEAction or the ME Association or get a politician involved? Or have you tried that already? Hearing your experience infuriates me. It’s just not good enough – you deserve so much more.
Thinking of you,
Tracey
hug to you Eva…..
I believe you.
Wish they would too.
May they see someone they respect and learn it is real, and really painful.
Eva, thank you for sharing your story. I truly hope someone with sense takes over your hospital care immediately. We understand the effort it must have taken to persist with writing this, and with each story bravely told and shared, more and more people benefit.
Wishing you truly compassionate, understanding, and informed care, and recovery out of the intense place you’re in.
I always new CBT and GED don’t work. If you’re in pain and can’t get out of bed you can try as much CBT as you like. It won’t work. This condition has not been researched and not much is available medication wise. They’ve made advances in treating other conditions such as Ms but fibromyalgia, CFS are overlooked. For those of us who don’t respond to antidepressants and gapapentin there’s nothing else left.
What exactly was graded exercise? As in What was their protocol on how much exercise to do, and when to increase. Did it accept a crash? Or was it continual increasing the amount of energy output.
I saw an old video of Simon Wessely’s GP wife saying exercise was to be done for ten minutes twice daily even when sick and feeling really bad. But surely they improved on that as heaps of people would have worsened.
Anyone know what the GET exercise protocol was in the last 5 or so years?
I’m just doing a blog on a graded exercise study which used an approach similar to NICE. They used an exercise study to get the heart rate.
Home exercise was prescribed at least five days a week, 16 weeks in total, with the initial 3 sessions lasting approximately 10 minutes. The participants began with 10 minutes of exercise at 30–40% of their HRMax (maximum heart rate). That was increased to 20 minutes at a 10% higher HRMax. Stretching exercises were added. The intensity and duration was increased until the participants were exercising at 70–80% of HRMax for 40 min at least five days a week at the end of 4 months.
Hi Cort,
Would it be possible for you to get Dr. Davis to give a detailed update on the metabolic trap/kynurenine clinical trial. A while back Dr. Davis said the kynurenine trial would be taking place in Sweden in the beginning of this fall. We’re almost two months into the fall season and there has not been a peep from Dr.Davis or the OMF regarding the trial. I’ve tried contacting the OMF, but all I got was a generic response thanking me for my interest and they couldn’t give an update because they are pursuing many theories. Anything at this point would give me and I’m sure many others in this community the piece of mind that this theory is still at the top of the list. Thanks in advance.
Best Regards,
Kahlid
Hi Kahlid,
I don’t know about the trial but I do know that COVID-19 is still stopping so much work. I don’t know if that’s true with this trial or not. When I next interview Ron Davis I will try and find out.
My general experience with these things is that they tend to take longer than expected – sometimes much longer than expected – unfortunately.
Excellent analysis from Professor Brian Hughes on the new ME/CFS Draft Guidelines entitled, “No More Mr NICE Guy…” :
1. The NICE reviewers meticulously assessed every single study for methodological rigour. Considering how doggedly CBT has been defended by its advocates – supposed experts in psychological therapies, remember – the results of the evaluation are, quite simply, humiliating.
2. In every single case, each of these so-called experts describes CBT and GET as “evidence-based” despite the fact that NICE has exposed the purported evidence to be of such low quality as to be meaningless. The “evidence” they refer to is not evidence at all.
3. Overall, across no fewer than 172 CBT studies, NICE graded 153 (89%) as “VERY LOW” quality and the remaining 19 (11%) as “LOW” on quality. Not a single study was found to have exceeded that abysmal threshold.
4. A similar bloodbath befell studies of graded exercise therapy (GET). Of a total of 64 studies of GET, NICE determined 52 (81%) to be “VERY LOW” quality and 12 (19%) to be “LOW” quality. Again, not a single study was any better than “LOW” quality.
5. “NICE’s verdict on psychosocial treatments for ME amounts to nothing less than an utter repudiation. That it comes from an authoritative agency and is based on a thorough empirical review is extremely significant.”
https://thesciencebit.net/2020/11/21/no-more-mr-nice-guy/