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Professor Garner, The BMJ and me: an alarming flip-flop on recovery from long Covid

February 1, 2021

As the year 2020 began, so did the story of the global pandemic which is now known generally as Covid-19. One year on, the world is still coming to terms with both the short and long term effects of the disease. The latest recorded worldwide death rates have exceeded two million and the disease is still claiming more victims. Populations everywhere are having to adjust their patterns of behaviour and learn to accommodate a new world order in global public health.

Long Covid

Many individuals are still reeling from the after-effects of the disease. Some patients who were not sick enough to be hospitalised still remain severely affected by a condition which has come to be known generally as long Covid. Long Covid describes a state whereby the initial virus appears to have gone but serious, life-limiting symptoms continue and resumption of normal activity remains frustratingly out of reach.

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Professor Paul Garner

Paul Garner is Professor of Infectious Diseases at the Liverpool School of Tropical Medicine. In March 2020, he contracted Covid-19. In May 2020, he began writing and broadcasting about his ongoing personal experience of living with long Covid. Like many others, he was clearly suffering considerable pain and distress from the symptoms that were continuing to prevent him from going back to his normal life as a busy academic and researcher. He also talked about the lack of knowledge and understanding from the medical profession which was causing him further distress.

Professor Garner was very frank about what he was going through. His intention appeared to be to open up a long overdue public conversation about the long-term effects of viruses in general and Covid-19 in particular. Representatives from a variety of patient groups and healthcare professionals responded, including members of the ME (myalgic encephalomyelitis) patient community.

From this point onwards, Professor Garner embarked on a journey which ended in a very different place from where it had begun.

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About myalgic encephalomyelitis/ME

Many people who live with ME first become ill following an infection. Although the initial infection may appear to have receded, patients do not then recover from the often devastating symptoms which persist, and may be lifelong. The range of symptoms is wide and the disease can be fatal. Prevalence estimates vary; the UK rate is generally put at around 250,000 patients, about twice as many as those with multiple sclerosis/MS.

The recovery rate from ME is estimated to be around 5%. As a result, the ME patient community is very familiar with the long-lasting effects of an initial infection which healthcare professionals frequently do not understand and often do not take seriously.

[Disclosure: I have lived with ME in varying degrees of severity since 1981. For more information about my background go to About.] 

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The BMJ‘s Opinion series

Having initiated this public dialogue, Professor Garner went on to write a series of six personal blog posts for The BMJ’s Opinion section about living with, and managing, long Covid. He described his personal journey through a very difficult time with great sincerity. He expressed appreciation for the various groups and individuals who had reached out to him, including representatives from the ME community.

On 19 May he wrote of the damage caused by over-exertion in an effort to recover:

I felt aggrieved as I had not done much at all. “You don’t understand pacing”, the ME Association adviser Charles Shepherd told me. He explained that this “post-exertional symptom exacerbation” is a good signal for people with the chronic fatigue syndrome/ME [sic]. The difference is with covid-19, the fatigue is happening at the same time as other dangerous complications.

And on 23 June:

What is worse is that there is increasing evidence that some doctors are dismissing this illness…….Health services are largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19. [my emphasis]. Yet for us “long haulers” the symptoms are the same, the management schedules are the same, even if we don’t quite fit the somewhat arbitrary definition of “chronic” at 4 months. 

A post-viral tsunami is hitting our health services right now, yet in the UK it doesn’t even seem to be on the national agenda. NICE have issued 28 rapid reviews and guidance on covid-19 this year, but their guidance on the chronic fatigue syndrome/mylagic encephalomyelitis [sic] is 13 years old. There is little evidence in the UK of a co-ordinated response, that is truly multidisciplinary, involves organizations such as the ME Association, and includes patients…….This stuff is real. People are ill. Doctors need to stop diagnosing this as anxiety. [my emphasis]. We have messed up before, lets’ not do it again with long term covid-19 illness. 

And on 4 September:

Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “Exercise therapy for chronic fatigue syndrome:” the conclusion was that patients benefit, feel less fatigued, and that there is no evidence that exercise worsens outcomes (although I understand this review is being updated). 

This wasn’t helping me. I don’t blame Cochrane—it is an edifice I have helped create—but these reviews represent for me a serious disconnect between mainstream medicine and my own experience, although I am no specialist in this area…….Charles Shepherd at the ME Association helped with explanations of the delayed payback with post-exertional malaise. This helped work out why I felt worse on some days, but not always—there is still a random element. Jennie Jacques, Open Medicine Foundation [which supports research into ME] Ambassador, gave me good advice, and has written an excellent narrative online about how to pace.…….

I thought this was going to be a short illness. I wrote my first opinion piece after six weeks of unrelenting illness, and am now writing at six months, with an illness that resembles ME/CSF [sic].

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My communications with Professor Garner

As a result of this last post on 4 September, I contacted Professor Garner directly. This is an extract from my first email:

…I have followed your discussions of your own condition and of Covid, plus its after-effects. I am so very sorry that you have been so ill for so long and that you received such inappropriate advice about management and recovery from the illness. All patients deserve so much better. 
I believe that some on Twitter have suggested that you contact me because I am a barrister. While I am indeed a barrister, the focus of my work is on the politics and history surrounding ME and related conditions. I also concentrate on ways in which we should be trying to change the toxic narrative which has defined the illness for decades. I follow the science although I do not claim any specific knowledge or expertise in that domain. My blog (see link below) reflects some of the work I do. 
If you think that I could assist you with your work on Covid/PCS/PVS/ME, please feel free to contact me. Whilst I am limited in what I can do because of my own health (ME in varying degrees of severity since 1981), I always try to respond to requests for assistance. 

He responded and over the next few weeks we had four discussions by email. Two of these were one-to-one and the other two were as part of a group with two other members of the international ME community. The exchanges were lively and good-natured and, for the most part, positive and constructive.

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The BMJ’s latest Opinion piece

I learned from an email autoresponse in early January 2021 that Professor Garner had contracted dengue fever.  On 25 January, another post appeared in the BMJ series entitled “Paul Garner: on his recovery from long covid“.

The tone of this new post was markedly different from the previous ones. Professor Garner’s journey to recovery over the preceding nine months had been substantially rewritten and was at odds with his observations in earlier posts. The post also launched a surprising attack on the ME community.

…Leaflets from ME/CFS advocacy groups had advice about not overdoing it. I learnt that the exhaustion I experienced after trying to exercise at week seven is termed “post exertional malaise” and is a key symptom of ME/CFS. I read that if I pushed myself, the raised heart rate would make me ill. I decided that dominating the virus did not work.

While pacing made sense initially, I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life. I started telling my friends that long covid was a metabolic disease that had damaged my mitochondria. I wasn’t depressed, but mentally low, and relapses were more common…….Seven months after the initial covid-19 I was referred to a CFS/ME specialist. The ME community sent me unsolicited emails about mast cell deactivation, biological causes of my illness, and told me to rest. [my emphasis]

I knew the symptoms were real, but somehow these pure biomedical explanations felt wrong. While waiting for the appointment, I cast around my international network of medical evidence specialists for help. I was put in touch with a PhD candidate in psychology from Norway who had completely recovered from post viral fatigue syndrome (CFS/ME) years ago and offered to share the recovery story. The story was very similar: no previous illness, no psychological problems, only long-lasting debilitating symptoms after an infection. I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” I thought back to an earlier experience in my 30s with being able regulate my tinnitus after quinine, and said yes, straight away. 

This opened the door that led to my recovery. I learnt that our primitive and unconscious defence mechanisms against injury and infection in the brain and other parts of the body sometimes get disturbed, giving false fatigue alarms. A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious…….

I know ME/CFS is associated with a variety of viruses and possibly other factors too, and recognise that the postviral syndromes have a wide spectrum of clinical manifestations. My experience may not be the same as others. I feel that I have looked down the barrel of the ME/CFS gun and disarmed it…….

I write this to my fellow covid-19 long haulers whose tissues have healed. I have recovered. I did this by listening to people that have recovered from CFS/ME [sic], not people that are still unwell [my emphasis]…

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The takeaways from that most recent post

  1. Professor Garner had long Covid from which he appears to have recovered
  2. His personal recovery journey has been long and painful. This reflects the anecdotal experience of others
  3. He now believes that the ME community, rather than assisting him, actually hindered his progress by providing him with information about ME as a biomedical illness thereby steering him away from the therapies which apparently have led to his recovery
  4. The contact from the ME community was unsolicited and unwelcome, despite his media appearances initiating a public discussion about the difficulties of recovery
  5. By extension, anyone with a similar condition – including ME – has the capacity to recover if only they are willing to follow the same (unspecified) process as he did, a process which cures by using the power of positive thinking to overrule negativity embedded in patients’ nervous systems

Points 1 and 2 are unremarkable. Points 3 and 4 are gratuitously offensive. Point 5 is irresponsible in that it promotes the theory that mind can cure body if only the patient is willing to embrace the process.

The view from England’s National Institute for Health and Care Excellence (NICE)

The use of an “exercise + willpower” approach is well established as potentially insidious when used as a recommendation for recovery from long-term post-viral syndromes in general, and for ME in particular. When this approach is adopted by a scientist of Professor Garner’s standing, it becomes downright dangerous.

The outdated NICE guideline for “chronic fatigue/myalgic encephalomyelitis (or encephalopathy)” [sic] or “CFS/MEis in the final stages of being updated. The last version was issued in 2007. The draft version of the new guideline was released in November 2020. The final version is due in April 2021.

The new draft guideline indicates that Graded Exercise Therapy is being removed as a treatment recommendation and that Cognitive Behavioural Therapy is being downgraded from a treatment aimed at brain retraining to a purely supportive therapy.

The draft guideline also specifically removes pseudoscientific treatments such as the Lightning Process (LP) as treatments for “ME/CFS” (as it is now termed). The process which Professor Garner used to achieve his recovery from long Covid sounds very similar to the LP. It seems that even NICE is not inclined to agree with Professor Garner on this point.

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The role of The BMJ 

The BMJ is one of the world’s oldest and most respected general medical journals. In publishing Professor Garner’s most recent Opinion piece, it assumed certain responsibilities.

Legally speaking, the piece was acceptable. Morally and ethically, it is more dubious, given its unwarranted attack on the ME community. However, the greatest criticism must be reserved for its editorial function. Some of the content of the piece was significantly at odds with his comments earlier in the series. This is editorially sloppy and does not reflect well on The BMJ‘s standards of oversight.

Unsurprisingly, there were many comments from readers below the post. The moderators exercised their legal and editorial judgment in carrying out their duty to ensure appropriate standards were met. Why, then, was the same level of editorial judgment not applied to the original post? Had that been done, most of the comments would have been unnecessary and an international patient community would not have felt so stunned and betrayed by what they had read.

Conclusion

Professor Garner’s post of 25 January 2021 demonstrates an extraordinary lack of empathy for a patient community with which he had previously identified so strongly. As to what caused such a profound and damaging volte-face, one can only speculate.

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Due diligence

The day after I read Professor Garner’s piece of 25 January, I sent him the following email. I have twice followed it up, asking for a reply. On the second occasion, I indicated that I would be writing a blog post about what he had said. I then received a brief response which failed to address adequately the points that I had raised.

Dear Paul
I was interested to read your 25 January BMJ Opinion piece about your recovery from Long Covid. I’m very glad to learn that you are feeling better. However, I was extremely disappointed to see your surprising attack on the “ME/CFS” community.
Responses to the specific points raised by your article are being posted in the comments section and on Twitter so I won’t repeat them here. However, there is one particular issue which I need to address with you directly.
You began discussing your situation as a Covid “long-hauler” in both broadcast and print media in May last year. This activity suggested that you were keen to engage in a public debate about long Covid and, as a related issue, post viral/chronic fatigue syndromes and ME. Having publicly invited that discussion, it seems highly disingenuous to describe the responses you received from the ME community as “unsolicited”.
As a result of your media appearances, I contacted you and you replied. Our subsequent email exchanges were undertaken in mutual good faith (certainly from my side) and seemed both positive and constructive. At no stage did you appear to be unwilling to participate in discussions, either in one-to-one conversations or as part of a group.
Unfortunately, your article suggests that my assumption about mutual good faith was mistaken. I would appreciate clarification from you on that point.
Finally, I would remind you of our group conversation of 18 September 2020 with [X and Y] when I said this:
“My guess is that many people who are experiencing long Covid will eventually recover, given the right management, although it could be a long, hard road. Eventually, there may be a small but significant number of long Covid patients who meet the criteria for ME (as with SARS-cov-1 and other viruses), including those diagnosed with CFS or similar. As you say, Paul, “[t]his is a spectrum of disorders”. Nevertheless, I’m unconvinced that it is a “one size fits all” situation.”
Your recovery seems to accord with my prediction but I’m unclear as to how comments such as this have provoked your gratuitous assault on the ME community.
I look forward to hearing from you.
With best wishes for a continued recovery.
Valerie
4 Comments leave one →
  1. Matthew Jenkins permalink
    February 1, 2021 11:11

    I think Paul Garner may underestimate how much he potentially gained, from the hindsight of the ME/CFS community.
    Those of decades past, like myself that caught Glandular Fever in February 1996, didn’t have the opportunity to pace, or rest our bodies, as we were expected back to work in our normal routines, in pretty quick time.
    When I had Glandular Fever, it was around my 21st birthday and I’d been in continuous employment, for 5 years, both as a full time shop manager, plus evening and weekend bar work totalling 70+ hours.
    I’d NEVER taken a single day off sick.
    Initially with Glandular Fever, I was given a 7 day sick note and had the diagnosis confirmed with a blood test.
    After a week, I felt seriously still very week and asked for more time.
    I was told, “Matthew, the symptoms you describe can go on for months and you have to return to work some time.” like some malingerer, despite my work record.
    I was given just 4 more days, then back in to 70+ hours a week, on my feet.
    If only I could have rested up, or even just paced for a few weeks, who knows if I would be where I am now, a quarter of a century later?

    Like

  2. Colleen Steckel permalink
    February 2, 2021 23:01

    Thank you for setting out the sequence of events for those who have not followed it closely enough to understand the damage.

    Many of us have been bringing up the crucial point that most people with post viral fatigue syndrome will recover although it may take many months. Thank you for having stated that to him

    Dr. Ramsay, who was one of the earliest experts in recognizing #MyalgicE, made a point of stating ME is not PVFS.

    Note: there is a reason the the ME International Consensus Criteria (2011) does not have a waiting period.

    I saw Garner specifically states he fit the Canadian Consensus Criteria (CCC). That is the criteria that used the ME/CFS label since 2003.

    Did he actually use CCC or, as many have done, confused the ME/CFS label with system exertion intolerance disease (SEID) aka the IOM report? The SEID label was rejected but the criteria is now used with the ME/CFS label. In other words, “ME/CFS” is now diagnosed using the SEID criteria.

    ME/CFS using the SEID criteria can be seen on the US CDC website.. and that is what NICE have stated they based their proposed guidelines on. The ME/CFS label with multiple meanings is adding to the confusion.

    The 2012 ME International Consensus Primer (#MEICPrimer) recognized that the CFS and ME/CFS criteria are inadequate and in 2012 stated on page ii that anyone with these diagnosis should be screened for ME using the guidance in the primer. From the IC Primer: “Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification. ”

    Many advocates since 2012 have supported the expert’s recommendation to diagnose ME using the guidance in the #MEICPRIMER.

    We need everyone diagnosed with ME/CFS to go through the screening process starting on pg 10 to get a proper diagnosis.

    Now is the time to educate about how to properly diagnose ME. Doctors right now have LOTS of opportunities to compare post-covid (longhaulers) to ME using medical tests. It is important they use the #MEICPrimer and not a vague list of symptoms under the ME/CFS label that most post covid patients will fit.

    I have been asking since early in this pandemic, when orgs insisted there would be millions of post covid patients joining the ranks of ME/CFS, what happens when they recover? My fear is that doctors will blame those with ME who don’t improve for not recovering like everyone else.

    I overlooked the damage that patients who are told they have ME/CFS “like us” would cause when they recovered. Will they all now think “ME/CFS” is a disease that anyone can push through and recover from?

    Won’t the recovered post-covid patients who thought they had “ME/CFS” ask. “What’s wrong with all those ME/CFS patients who don’t recover? I recovered… why can’t they?”

    Paul Garner didn’t create this mess.. he exposed it.

    The solution is to make sure medical education to diagnose ME is based on the guidance in the ME International Consensus Primer. Links and more information can be found at http://www.MEadvocacy.org/resources and http://www.ME-International.org. (For orgs in other countries who support & promote the ME ICC, see org pages at ME International.)

    Like

  3. February 6, 2021 13:59

    The IOM Report recommended the title ‘Systemic Exertion Intolerance Disease’ to describe the fact that the defining feature of the illness (ME/CFS) was that ‘exertion of any kind – physical, cognitive or emotional – may adversely affect many organ systems…’
    Having referred elsewhere to the ‘misunderstanding that this illness is psychogenic’, the first recommendation was to get rid of the label ‘chronic fatigue syndrome’, and to give this illness a classification entirely separate from Chronic Fatigue Syndrome or neurasthenia.

    These recommendations completely dismiss any relevance of psychiatry or psychological treatments.

    ‘exertion – of any kind – may adversely affect many organ systems’….exertion can do multisystem damage. The central diagnostic feature is ‘PEM’….the signal that this is a disease in which exertion is doing harm, and has the potential to harm, not just one organ, but a whole system of organs, and not just one system, many systems.

    The many who have been driven into severe and very severe ME through exercise, either through misapplied strength of character or through being persuaded, or coerced into a systematic program of exercise would agree that they have suffered multisystem damage.

    It clearly follows that the program of several months rest recommended by Ramsay is a logical approach to this disease. It is notable that until the psychiatrists got hold of ME (following the TIME article of January, 1970, based on McEvedy and Beard’s BMJ articles published in the BMJ that month, but not referenced by TIME), ME was a disease from which only a fraction of patients failed to recover. Now only a fraction do. (5%?)

    Now to Gerada and Garner and their BBC Breakfast appearance. Both report that they were made worse by exercise initially. Gerada was reined back by her ‘wonderful’ personal trainer, who made her start from a very low level and increase only very gradually. What was she doing the rest of the time? Garner reports that he spent months ‘avoiding exercise’ because he had got so worried about his symptoms. He then adopted exercise and positive thinking. Effectively, they have both had a period when they were largely resting….as Ramsay would have advised.

    They then became able to exercise again.

    And insist that it was the exercise that made them better…..

    Like

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