Trial By Error: Oxford-NHS Recommends GET/CBT for Post-COVID “CFS” Patients

If you appreciate this piece and/or my work in general, here’s a link to my current UC Berkeley crowdfunding effort: https://crowdfund.berkeley.edu/project/20159

**********

By David Tuller, DrPH

Since the coronavirus epidemic hit, people with ME have been concerned about the possibility of a secondary wave of post-COVID-19 cases of prolonged disease–especially given emerging evidence of neurological complications of the illness. Key investigators in the field, attuned to the same possibility, are planning prospective studies of COVID-19 patients to track whether some develop an ME-like condition. Such studies could provide significant insights into the pathophysiology of post-viral disease.

Others are taking a retro approach and falling back on stupid old habits. The Oxford Health NHS Foundation Trust–the agency that oversees NHS services in the Oxford area–recently posted a guide about coronavirus and fatigue that recommends, yes, graded exercise and cognitive behavior therapy. This pamphlet reads as if it emerged from a time warp. It’s the Rip van Winkle approach to health care–this crap could have been written 20 years ago. The pamphlet provides no indication that the author or authors are aware that the advice being dispensed has been contested fiercely in recent years–and that the National Institute for Health and Care Excellence is currently revising its outdated guidance for the illness.

The Oxford pamphlet was produced by an entity called the “psychosocial response group.” Yet when I searched the Oxford Health site for that term, nothing came up. So it is unclear who should take responsibility for what is written here.

The pamphlet gets it wrong from the start. Here’s the first paragraph: “This leaflet is one of a series about Coronavirus and mental health. The leaflets contain information about how the Coronavirus outbreak might affect your mental health, how to look after yourself, what to do if a problem persists, and where to find further information.”

That’s very nice. Has someone mentioned lately to the Oxford Health NHS Foundation Trust that this condition is not a mental health or psychiatric illness?

Here’s how the pamphlet describes what it calls “chronic fatigue syndrome”: “The main symptom is persistent fatigue (tiredness) and exhaustion which can be severe and disabling.”

The description allows for, but does not appear to require, any other symptoms. Among the other possible symptoms listed is “malaise—feeling unwell or ‘out of sorts,’ especially after exercise.”

This is pretty close to so-called “Oxford criteria” for diagnosing CFS, promulgated almost 30 years ago. This case definition requires only fatigue to be present for a diagnosis. Recent case definitions of the condition (or whichever condition is meant by the other names used for these various case definitions) all require the presence of the core symptom of post-exertional malaise, or whatever this symptom is called.

Yet the new Oxford pamphlet does not specifically mention post-exertional malaise. The inclusion of “malaise” as a possible symptom is an apparent nod toward the PEM concept, but a feeling of being “out of sorts” does not come close to describing the actual lived experience that patients routinely describe. This is like comparing a stubbed toe to being run over by a truck.

Per the Oxford pamphlet, many people who get CFS have personality traits that get them into trouble; those at risk post-COVID-19 apparently include “people who have very high standards, like to do things well and do not like to let other people down.” Such people, the pamphlet warns, “can push themselves very hard and do not allow themselves time to rest.”

In fact, the pamphlet’s framing echoes the hypothesis that deconditioning is the prime cause of the devastating CFS symptoms–a hypothesis articulated way back in a 1989 paper co-authored by Simon Wessely and Trudie Chalder, among others. Here’s what the pamphlet posits about factors that can help precipitate CFS after a viral illness:

“*Resting too much, for example spending most of the day in bed or doing very little, will lead to loss of fitness and muscle strength. When you try to resume normal activities you may find you cannot do as much as you expect to do. You then rest more, causing further loss of fitness in a vicious cycle.”

*Sleeping for hours during the day can lead to general malaise and problems sleeping at night. This leads to more daytime fatigue and more resting, which causes more problems sleeping at night.”

*Not allowing yourself time to recuperate and get better, such as going back to work too soon or resuming normal activities before you are fully well.”

Let’s be clear: There is no legitimate evidence that deconditioning and this purported “vicious” cycle cause the disease at issue here. This hypothesis was fully tested in the PACE trial–what its lead investigators called the “definitive” study of the CBT/GET intervention paradigm. That experiment failed to generate the expected results. Unfortunately, the authors chose to publish their findings in prestigious journals only after engaging in multiple methodological and ethical lapses that violated core scientific principles.

Now this Oxford pamphlet has emerged from the intellectual swamp of the CBT/GET ideological movement to once more recommend these failed treatments for recovery from CFS. Haven’t we been here before?

The pamphlet does offer pacing as an option. But it links pacing with “activity management,” presenting it as means of breaking a supposed “boom-and-bust cycle” so that patients can gradually start increasing their energy output. Then, when discussion turns to graded exercise, there are laughable statements like this: “Graded exercise has been shown to be effective in reducing fatigue and getting back your fitness after CFS.” The leaflet recommends that the chosen exercise be “performed several times a day” and “performed every day–good days and bad–otherwise the benefits of the activity already gained by your body will be lost.” Ok, then!

And here’s what is written about CBT: “Cognitive Behaviour Therapy (CBT) is a form of therapy which has been shown to be helpful for CFS/ME. It helps you to identify thoughts and beliefs which maintain the problems…CFS/ME may relate to longstanding problems such as depression, chronic worry, perfectionism or low self-esteem.”

I mean, really. Isn’t this 2020? The notion that there are “thoughts and beliefs” that “maintain” patients in a state of illness should have been discarded with the failure of PACE. I plan to ask the Oxford Health NHS Foundation Trust for references for the (mis)information provided in the pamphlet. I will also ask about  the role of the agency’s “psychosocial support group.”

 

 

Comments on this entry are closed.

  • Wendy Boutilier 16 April 2020, 6:50 pm

    Under the current WHO ICD 10 guidelines, if Post Coronavirus presents a prolonged recovery it could easily qualify as Post Viral Fatigue Syndrome as per G93.3. That’s where Myalgic Encephalomyelitis is categorized. It appears that the Psychiatric Collaborative is preparing to hijack these patients.

  • Anil van der Zee 16 April 2020, 7:03 pm

    “I plan to ask the Oxford Health NHS Foundation Trust for references for the (mis)information provided in the pamphlet. I will also ask about the role of the agency’s “psychosocial support group.”

    Yes please do. Sad to see this pamphlet. Clueless!!

  • Marilyn Gavranovic 16 April 2020, 10:08 pm

    The pamphlet is fraudulent. There is no evidence to for these claims. Emotions accompanying severe & extended eg sadness, helplessness, fear.. are natural & reasonable , not mental health responses. But being told these natural feelings are MH issues, only adds to patient distress.
    The pamphlet is misguided & potentially harmful

  • Alicia Butcher Ehrhardt, PhD 17 April 2020, 1:16 am

    You think you’re making some – ANY – progress, and the greed motive comes out from under a rock. It is the ONLY reason for pushing something KNOWN not to work, by those who must benefit from it financially somehow, even if it is only through an UNDESERVED status.

    It would have been so much better to have GET+CBT finally retracted before the virus hit, but makes it even more important now to keep pursuing the FULL RETRACTION, and preferably the removal of those who keep pushing it.

    Hordes of new people will be harmed if this continues.

    Especially since evidence seems to imply that people can sometimes recover if they rest aggressively during the period after they get ME/CFS, those critical first three years – and GET would do even MORE damage by ruining the possibility of recovery for the newly-ill people.

  • Dr E Goudsmit 17 April 2020, 2:42 am

    The term ‘psychosocial’ refers to relationships, upbringing etc. There is nothing clinical. Which suggests these are not competent scientists with the relevant knowledge. CBT advice etc refers to people with fatigue only. Not pathology. We know that a significant number of Covid-19 survivors have lung pathology so we need research on them. You can’t generalise from plain fatigue to post-covid-19 infections. Sofar for the science bit.

  • CT 17 April 2020, 4:03 am

    I doubt you’ll get any response from the Oxford Health NHS Foundation Trust but I guess it’s worth a try. You never know, there may be someone who works for them who has an ounce of decency.

  • JL 17 April 2020, 5:14 am

    As CT says, it is doubtful the authors and publishers of such a pamphlet will be open to retracting their shiny new statement of faith. Is there a way to get so many people to understand the silliness and devastating harm this thinking will do if it is left unchecked, that the relative effect of this would be diminished? Oh, that it would be seen to be the nonsense that it is.

    Thanks for your work, David. Donation made!

  • Elizabeth Edwards 17 April 2020, 5:58 am

    Thank you David. Yes, it’s a remarkable document, chiefly for its omission of ANY research references to support all those dubious assertions. Shocking that the NHS – who we all want to support at this time – demeans itself through association with this sort of quack medical advice.
    I’m wondering too about the legality of producing such unevidenced coronavirus related advice at this time. While many social media outlets are cracking down on false cures, is there not some sort of legal safeguard in place to prevent this sort of thing?

  • Barry C 17 April 2020, 5:58 am

    ‘The leaflet recommends that the chosen exercise be “performed several times a day” and “performed every day–good days and bad–otherwise the benefits of the activity already gained by your body will be lost.”’

    Exercise recommendations like this for people with ME/CFS are bordering on criminal.

  • Marc Y 17 April 2020, 6:23 am

    Thank you for pointing this out. Unfortunate and hazardous to many people’s well-being. It would be great if you could track down its origin and correct the author/get it out in the rubbish bin. It may have been done out of ignorance but damaging nonetheless.
    Thank you for all you do on behalf of people with ME.

  • Lianne sykes 17 April 2020, 6:31 am

    Your an absolute moron and it is disgraceful that you recommend cbt and get. You have no clue how damaging this is to m.e patients.

    You should be sacked

  • Caron Ryalls 17 April 2020, 6:41 am

    Surely the advice for any severe illness which results in natural deconditioning is for patients to give themselves time to recover, to gradually increase their daily activity and to rest when necessary in order to allow themselves to fully recover, but if they are not recovering, or are struggling with unnatural fatigue and intolerance to normal activity, then they should seek medical advice as this is not a normal recovery and suggests an ongoing health problem which needs proper investigation.

  • Andy Hugh 17 April 2020, 6:50 am

    There is NO GUARANTEE of recovery from a decline in function with ME. To prescribe exercise without knowing a persons physiology risks long term harm and the Oxford author should be jailed for inciting harm.

    A Reverend Jim Jones in the making.

  • CT 17 April 2020, 6:51 am

    The OHFT Psychosocial Response Group appears to have produced 2 more pamphlets:
    Coronavirus – Coping with the Coronavirus – Worry and Uncertainty
    and
    Coronavirus – Coping with the Coronavirus – Recovering from Trauma

  • CT 17 April 2020, 6:57 am

    There’s a pamphlet on ‘Depression’ and one on ‘Bereavement’ too.

  • Helen McDade 17 April 2020, 8:56 am

    Isn’t this reportable to the General Medical Council? Medicines as suggested treatments for Covid 19 have been disallowed by the medical establishment and the UK governments because there have not been double blind trials for the drug specifically for use on covid patients – even when the drugs are approved for other conditions. So how can doctors recommend graded exercise and CBT for Covid, a new unknown disease caused by virus?

  • jimells 17 April 2020, 9:46 am

    This is exactly what one expects from a system that just bought two million uncertified virus test kits and found they were all defective. The deal required payment up front, no inspections allowed, and of course no refunds. A school child could’ve predicted the outcome.

    It is no surprise to me that Western “Civilization” is circling the drain, given the incompetence and greed of our dear leaders and their camp-following parasites. I wonder if there is a special place in Hell for the psychobabble vultures feeding off the misery of millions.

  • CT 17 April 2020, 9:57 am

    I really hope so, jimells.

  • Lesley Francis 17 April 2020, 11:13 am

    I think taking these people to court and winning, is the only way to stop this. I know its horrible to think of more people being damaged but maybe people following this advice and showing how they were harmed could lead to legal action.

  • Lady Shambles 17 April 2020, 12:58 pm

    ” I wonder if there is a special place in Hell for the psychobabble vultures feeding off the misery of millions.”?

    “I really hope so, jimells.”

    Thirded!

  • Allison HM 17 April 2020, 7:38 pm

    This was predictable, unfortunately, as soon as there was public mention of so-called post-COVID symptoms. (The prefix “post” is in itself ambiguous, suggesting the virus has left the body, but that’s a different debate.)
    Thanks, David, for addressing this insulting and illogical BPS marketing nonsense so quickly.
    Thanks also for referring to any chronic symptoms from COVID as a possible “M.E.-like illness”, and not stating, as many people have, that COVID could “cause” new cases of M.E.. This is an important distinction.
    Keep at it. Your reasoned voice is needed and appreciated.

  • Dr E Goudsmit 18 April 2020, 4:23 am

    Looks like they’ve taken it down. Can’t get to it via google. Only your link. Which doesn’t mean they won’t upload it again.

  • Lucie Webb 18 April 2020, 9:14 am

    https://www.ouh.nhs.uk/chronic-fatigue/treatment/whats-involved.aspx
    What the hell is this?
    Shall I sign up for it and go as a mole? I am only a flyweight but I would like to throw my weight around at the Churchill Hospital.

  • Jen 18 April 2020, 10:31 am

    Wonder if the leaflet can be reported to the advertising standards agency for promoting fanciful non evidence based claims for treatments to patients that may be greatly harmed from them. There is a lot of evidence supporting harm and no scientific evidence to back up what they are claiming. Surely this leaflet contravenes ASA regulations?

  • Lene Christiansen 18 April 2020, 11:42 am

    Unbelievable that we still see those recommendations after the Pace fraud. I guess we will see a lot of Post COVID-19 fatigue cases, so the GET/CBT nonsens has to stop right now. Thanks, David.

  • Beth 18 April 2020, 6:16 pm

    I found your blog in the course of doing an internet search on post Covid infection fatigue. I apologize for leaving this comment here, but I couldn’t find contact info for you on line and I’m having trouble finding any information on what is happening in my body (my primary care physician is at a total loss). I am at the four week mark since falling ill with Covid. All the major symptoms have passed (fever, dry cough, SoB, diarrhea, abdominal pain, inappetence, myalgia), but the severe fatigue that began the second week of illness continues and is intermittently debilitating. I used to be a healthy, middle aged woman, normal BMI, who exercises regularly (I was a runner). I don’t smoke or drink. I eat a whole foods diet, mostly plant based and organic. Now, I have a few normal feeling hours here and there between periods where fatigue falls like a leaden veil. I have to lie down immediately. Just tying to get up to use they bathroom feels insurmountable. Sometimes I sleep for thirty minutes to an hour, but I never wake up feeling refreshed as one would expect after a nap. I can barely make it to 7pm at night before crashing. When I feel good, I walk to the end of the road and back (.5 mile total) and that wipes me out for the rest of the day. Even watching movies is too tiring. I’m not depressed, which saying something considering the times we’re current living through, but I would like to understand what is happening to me. Any references that could illuminate the biological process of what’s happening in my body post coronavirus infection would be appreciated. Again, my apologies for leaving this kind of hyper-personal comment on your blog post. I *really* appreciate the work you’re doing.

  • Lidia Thompson 20 April 2020, 6:47 am

    On 20th April 2020, Physios for ME sent a letter (which has been counter-signed by over 20 health professionals, organisations and MPs) to the Chief Executive of Oxford Health NHS Foundation Trust. It requests an immediate withdrawal of their publication and offers more appropriate advice based on current research and understanding.
    It can be accessed by following this link:
    https://www.physiosforme.com/opposition-to-fatigue-leaflet

  • Philippa Armstrong 21 April 2020, 4:51 pm

    I am a middle aged female at week 5 assumed post C19 infection and be am also suffering from profound and debilitating fatigue and if I push through fatigue my muscles start to shake and symptoms return. My initial symptoms were initial loss of smell and taste followed by high temp, cough, tight chest, pressure and severe stuffiness plus bleeding in nose -still only 40% taste and smell returned plus painful swollen sinuses have had two lots of antibiotics little or no improvement. I have friends of same age who are suffering similarly. ☹️

  • Kiira Jaakkola 1 May 2020, 2:09 pm

    The link to the Oxford pamphlet now seems to lead a “404 Not Found” page.

  • Christina 14 May 2020, 11:24 am

    Thank you so much for your article. When I read the Oxford pamphlet I was a little traumatised that yet more people were going to be damaged by the medical profession using graded exercise therapy. Thankfully a colleague sent me your article. I’m more thankful that our therapies team aren’t using that information, we’re writing our own. It’s wonderful to know they’re listening to ME/CFS patients and adapting information appropriately.