By David Tuller, DrPH
It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them.
We are past the pandemic’s half-year mark. Since most (but not all) case definitions in the ME and CFS category require symptoms to be present for six months, some long-Covid patients, called long-haulers, might already meet diagnostic criteria for the disease. But many clearly suffer from symptoms and organ damage not associated with ME and its variants.
I’ve written some posts about the efforts of key members of the CBT/GET ideological brigades to impose their brand of “treatment” on people experiencing fatigue after a bout of acute Covid-19. It seems these experts cannot stop repeating the same bogus and discredited arguments about fatigue and deconditioning and problematic cognitions that they’ve been promoting forever. And now they’re assuming the same stupid perspective relative to Covid-19. As always, their logic seems very Trumpian.
Luckily, some in the UK are speaking out against this incompetent and unwarranted advice. In particular, physician Paul Garner, a professor at the Liverpool School of Tropical Medicine, has written a series of compelling posts for BMJ about his struggle with profound exhaustion, multiple relapses and other ongoing medical complications after an acute episode of Covid-19. He has also reflected thoughtfully and compassionately about the parallel experiences of people with ME.
I am pleasantly surprised that BMJ is publishing Garner’s posts. In multiple interactions with Virology Blog over the past few years, BMJ has demonstrated a singular lack of editorial integrity. This has been most apparent in the egregious handling of the 2017 study of the Lightning Process as a treatment for adolescents with chronic fatigue syndrome, conducted by Professor Esther Crawley, Bristol University’s ethically and methodologically challenged pediatrician. (As a reminder, the Lightning Process was created by British Tarot reader and aura specialist Phil Parker.)
In that study, as Virology Blog documented almost three years ago, Professor Crawley and her colleagues recruited more than half the participants before trial registration; swapped primary and secondary outcome measures based on early data, thus being able to report positive rather than null results; and failed to disclose these actions in the published paper. Rather than retracting the paper for violating core principles of scientific research, BMJ rewarded the investigators for their misbehavior last summer by republishing the original findings–albeit with a 3,000-word correction/clarification and a 1,000-word editor’s note justifying the unjustifiable decision to leave the paper in the medical literature.
After that, more than 70 experts from Harvard, Columbia, Berkeley, University College London, and other major research centers signed an open letter to BMJ editorial director Fiona Godlee. The letter called the decision to republish the original findings “scientifically and ethically indefensible” and “potentially harmful” to children. It also stated that the journal “has now re-published positive primary results generated by outcome-swapping in a study that did not meet a strict publication requirement [i.e. prospective registration] specifically intended to prevent outcome-swapping and other kinds of selective outcome reporting.”
The Lightning Process study and its illegitimate results remain in the literature. It is now being cited by Norwegian researchers seeking to conduct another clinical trial of this woo-woo training–this time for adults. Shame on BMJ and everyone involved.
So, enough of that diversion. Below are the first few paragraphs of Garner’s most recent post:
“Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this was not the end; it was the end of the beginning.
The beginning, a “near death” experience with covid-19 that I described earlier, was like a grenade had exploded in my hands. Dazed, deaf, and befuddled, I spent weeks wondering, where has the shrapnel lodged? Are some fragments still fizzing? In my heart? Is my brain still infected? Why was I stumbling for words?
I knew I needed to pace. My head was foggy, I lost my symptom diary spreadsheet, I forgot to measure screen time. I sought professional help, I wanted feedback, practical advice. I was desperate, tired, grumpy. I wanted someone to help me pace and thought occupational health could refer me to a specialist service. Instead, I was told I needed a course of cognitive behaviour therapy (CBT).
Read the rest here.
Last month, BMJ posted an article called “Management of post-acute covid-19 in primary care.” It was better than expected–again, given the BMJ provenance. In the section on fatigue, it includes this surprisingly reasonable paragraph:
“There is much debate and controversy about the role of graded exercise in chronic fatigue generally (see patient responses to a recent Cochrane review) and in covid-19 in particular (see a recent statement from the National Institute for Health and Care Excellence (NICE). Pending direct evidence from research studies, we suggest that exercise in such patients should be undertaken cautiously and cut back if the patient develops fever, breathlessness, severe fatigue, or muscle aches. Understanding, support, and reassurance from the primary care clinician are a crucial component of management.”
So far, the article has more than a dozen rapid responses. One, from Patricia Davis, a retired British teacher, addressed the gaslighting that ME patients have faced and how the same is happening to long-Covid patients. Here’s how it begins:
Pseudoscience wears many guises. People with poorly understood long term medical conditions have always been the target and victims of snake oil sellers promoting their untested and sometimes dangerous treatments, some coming at us from unexpected directions. My aim in this rapid response is to warn post-Covid sufferers and their clinicians about the perils ahead.
If clinicians cannot provide effective treatment that enables people to return to their normal activities, and, worse still, if they provide ineffective or harmful treatment, or express disbelief in the severity or even the reality of those symptoms or misdiagnose them as indicating psychological problems, where can a patient with long term debilitating physical symptoms turn for help?
People with ME/CFS understand this dilemma all too well. And now many Post Covid patients are confronting it too. In my thirty years living with ME/CFS, I have experienced disbelief, misunderstanding and unhelpful advice from all directions – advice to exercise from doctors that made me sicker, and alternative medicine whose only effect was to empty my wallet.
You can read the rest here.
12 responses to “Some Stuff about Long-Covid, BMJ and ME”
Please stay well. You are an army of one, and part of an effort of similar individuals who are tackling huge establishment biases (and I still think we need to follow the money).
I can’t imagine how this would have gone without you on our side these past years.
Genus ‘Terrier’- with a little artistic license
David ‘J R Terrier’ Tuller : Stubborn, Energetic, Intelligent, Fearless, Athletic, Vocal
Colors: White, Black & White, White & Tan…… shaven or u shaven…..!
Developed in England (some 200 years ago) to hunt ‘foxes , the Jack Russell David Ttt….Terrier, also known as the Parson Russell Terrier, is a lively, independent, and clever little fellow!………charming and affectionate, but also a handful to train and manage. For experienced academics only……….
I started reading the BMJ posts by Paul Garner and was concerned to see him linking to a Vincent Deary video (https://www.youtube.com/watch?v=nIcOVUqQMfI&feature=youtu.be) in which Deary appears to be still going on about ‘Anne’, just as he was 5 years ago in this “We need to talk about Anne” presentation -(https://www.youtube.com/watch?v=4qWar7HhJh4). It would be very interesting to know Paul Garner’s opinion on Deary’s 2015 presentation.
Although a substantial number of COVID-19 related codes have already been created and are available for use in ICD-10 and the SNOMED CT terminology system, no terminology has been created for the coding of “Post COVID-19 syndrome”.
A request was submitted by someone within the NHS, possibly a coder, on August 19 for creation of a new Concept term(s) for “Post COVID-19 syndrome” or similar terminology (subject to consultation with clinical bodies) for addition to the SNOMED CT UK Edition.
It’s currently unclear whether this request is specifically for the UK Edition of SNOMED CT or whether it is being considered for adding to the International Edition, where it would then be absorbed by all the various national extensions.
The Request Number on the NHS Digital Submission Portal is 32731.
I will put the URL in the next comment, as comments I make to David’s blogs that contain links, often go into moderation.
The link for the request for a new term and code to be created for SNOMED CT is:
NHS Digital Request Submission Portal: Request #32731 for addition of Concept code to SNOMED CT for “Post COVID-19 syndrome” or similar terminology (subject to consultation with clinical bodies):
In some countries, the SNOMED CT terminology system is used in conjunction with ICD-10 and there are code maps between SNOMED CT’s disorders and findings Concepts and ICD-10’s disorder/disease categories.
For global standardisation, it would be preferable for the two systems to be using the same definitions and terminology for “Post COVID-19 syndrome” (or similar term, and any associated terms, for example, optional specifiers).
I have asked the WHO’s Director-General, Dr Tedros Ghebreyesus, and Dr Samira Asma (Assistant Director-General for Data, Analytics and Delivery for Impact) whether WHO is developing code(s) for “Post COVID-19 syndrome” (or similar term and associated terms) for emergency addition to ICD-10 and for ICD-11.
My position is this: How chronic post COVID-19 presentations (which will include a range of symptoms and signs, according to sequelae in various body systems, in addition in some cases, to chronic fatigue and post exertional symptoms and signs) are defined and the development of new terminology for diagnosing, coding and statistical reporting of chronic post COVID presentations is a matter for collaboration and standardisation between clinical bodies, SNOMED International, the WHO classification team (in collaboration with WHO-FIC Collaborating Centres) and the post COVID patient community and its clinical and research allies.
I wonder if Dr. Tuller is sufficiently independent-minded and brave to test my proposed remedy for COVID-19 on himself? The remedy is “Take a scant tsp of CsCl mixed in a glass of juice, wait ~8hrs, then eat a banana. Expect diarrhea. Repeat 3-4 times.” That’s it! CsCl is currently FDA-approved for clinical treatment of certain aggressive cancers, but it has a spotty track record. It can be ordered online. An academic like Dr. Tuller should visit the website http://www.cancermind.com for details. CsCl targets the viral RNA polymerase, stalling viral transcription and replication. The remedy might work on lingering viral transcription in Long COVID cases. It is certain to work against the seasonal flu now rapidly approaching because the Influenza virus RNA polymerase and nucleocapsid structure have been shown to be inhibited by CsCl.
So what IS an abnormal CFS test then? WHat do people all have that is abnormal?
I started reading the BMJ posts by Paul Garner and was concerned to see him linking to a Vincent Deary video–https://www.youtube.com/watch?v=nIcOVUqQMfI&feature=youtu.be in which Deary appears to be still going on about ‘Anne’, just as he was 5 years ago in this “We need to talk about Anne” presentation –https://www.youtube.com/watch?v=4qWar7HhJh4 . It would be very interesting to know Paul Garner’s opinion on Deary’s 2015 presentation.
Two additional requests for new Concept codes for SNOMED CT UK Edition have been submitted via the NHS Digital Submission Portal:
Request No: 32886 (submitted on September 09, 2020) for addition of a new Concept code for ‘Post-COVID syndrome’
Request 33004 (submitted by a GP on September 25, 2020) for addition of a new Concept code for ‘Suspected long Covid’ and ‘Long Covid’.
In situations where there is no definitive ICD-10/OPCS-4 code(s), clinical coders, NHS bodies, academic institutes and non-coding professionals can submit queries to NHS Digital for advice.
The Query Resolution Database is publicly searchable and gives access to resolutions provided in response to customer queries.
Between March and July, a significant number of queries were submitted in relation to COVID-19 and ICD-10 coding and emergency coding, including a query (Query UID 13409 resolved on July 22, 2020) requesting advice on emergency coding of ‘Post covid-19 syndrome’.
To read this query and the advice received from NHS Digital see Post #38 in this S4ME forum thread:
The WHO has released further Emergency Use codes for classifying consequences of COVID-19 for ICD-10. These are not yet added to the ICD-10 browsers for ICD but information can be found on the WHO site.
For more information on these Emergency Use codes see Post #39 in this S4ME forum thread: