BJGP - The long tail of the COVID pandemic - a personal reflection - Elke Hausmann

[Kalliope]

Another brilliant article by GP and LC sufferer Elke Hausmann.

Quote:

I have been confronted with symptoms that I wasn’t prepared for at all through my medical training and which have changed my life entirely. I did not know anything about post-exertional malaise (PEM), the hallmark symptom of ME, which is also present in many people with Long Covid, or dysautonomia, and I knew very little about severe ME.

PEM is such a difficult symptom to convey to others who have never experienced anything like it, and it is frustrating to learn how the knowledge of PEM has been there in the ME patient community all along for decades now, but our understanding of the underlying pathophysiology is still lacking due to years of indifference and underinvestment in research.

The long tail of the COVID pandemic – a personal reflection – BJGP Life

bjgplife.com

 

[Axel]

"Inevitably, the initial focus on Long COVID, including much new research being initiated, also benefited the ME community, who have been in a similar position as patients with Long Covid"

I don’t entirely agree; on the whole, the researchers started from new without taking into account the research that had already been carried out on ME/CFS, which caused both groups to waste a considerable amount of time.

 

[Peter T]

"Inevitably, the initial focus on Long COVID, including much new research being initiated, also benefited the ME community, who have been in a similar position as patients with Long Covid"

I don’t entirely agree; on the whole, the researchers started from new without taking into account the research that had already been carried out on ME/CFS, which caused both groups to waste a considerable amount of time.

Also we have the confusion that much of the Long Covid research ignores PEM, meaning we don’t know if it is relevant or not to ME/CFS.

 

[Nightsong]

Inevitably, the initial focus on Long COVID, including much new research being initiated, also benefited the ME community

Did it, though? As far as I can see much of the research in the LC area has been of extremely poor quality. In many ways it seems to have recapitulated the same errors as much historical ME/CFS research, focussing on dead ends such as viral persistence and trialling fringe treatments like LDN and stellate ganglion blocks (both of which have long been treatments in search of a disease). And the principal definition that is used - the WHO one - is so heterogeneous that it could potentially encompass everything from burnout to the effects of lung damage.

There is a sense that we are on our own, with Long COVID clinics up and down the country either closing7 or focusing on a ‘rehabilitation’ approach

But were there any clinics that didn't focus on either a rehabilitative or purely psychosomatic approach? I didn't hear of any. To be honest I think it is a good thing that they are closing; overwhelmingly they didn't provide actual medical care or reasonable support and in general probably did more harm than good.

Having said that, Long COVID clinics do provide much needed support for patients. Judging from what I heard at a recent clinical update on Long Covid for GPs locally,

I wouldn't take that at face value unless it accords with the experience of patients in the area. Local support groups will probably tell a different story.

When I did my medical training 20 years ago, my first medical textbook was Kumar and Clarke’s ‘Clinical Medicine’ (Elsevier), which gives medical students a first overview over the classification of medical conditions.

Kumar & Clark has actually become worse over time. In an older edition that I have there was at least a separate chapter for "chronic fatigue syndrome". As bad as it was, in the two most recent editions it is just all folded into a "MUS" chapter. Of course, others are just as bad, and there only seems to be one major U.S. textbook that is even partially reasonable.

after the editorial team rejected a petition to better reflect the nature of the disease as a complex chronic neuro-immunological condition in their 2025 updated edition

Was that actually the specific request? If so, I'm not surprised they rejected it. Perhaps if it had been framed around adjusting the "medically unexplained" language, adjusting the suggested treatments to align more with current guidance and adding in sections on how patients might be supported in practice, it would have stood a better chance of succeeding.

There is much that could be done to support patients already in the here and now.

Indeed. So very much more.

 

[rvallee]

"Inevitably, the initial focus on Long COVID, including much new research being initiated, also benefited the ME community, who have been in a similar position as patients with Long Covid"

I don’t entirely agree; on the whole, the researchers started from new without taking into account the research that had already been carried out on ME/CFS, which caused both groups to waste a considerable amount of time.

It also hasn't benefited anyone other than quacks and grifters, not even those with Long Covid, precisely because they refused to follow the evidence.

I have not seen a single benefit to anyone out of this, all intentional. Medicine's mishandling of LC is one of the worst failures in the history of professions, they got everything they needed handed to them and just let it drop. No one has ever failed to even bother trying with this much to go on.

I understand the reasons for this continued message, but it would serve us a lot better to just plainly admit the truth. I just doubt that it would ever get published anywhere, so that's likely the main reason. Telling the truth is a truly radical act, no more radical than when confronting a throne built on lies.

 

[BrightCandle]

One big impact of Long Covid is it sucked up all the funding and interest including from ME/CFS charities that spent millions on Long Covid. Now the Long Covid funding has dried up the situation in terms of ME/CFS research funding is worse than its ever been. The US is funding ME/CFS the least it has for 20 years, the UK is doing even less than before occasionally funding the genetics every decade and Germany's money wont be used until next year and will probably be blown on auto immunity. Funding for ME/CFS is worse because of Long Covid, the charities have spent less time focussed on its sufferers because of it for half a decade and the research in Long Covid hasn't brought a single treatment or really any usable insight into the disease. Long Covid has increased the number of sufferers and disabled with similar conditions into a world with even less empathy and funding.

 

[Eleanor]

after the editorial team rejected a petition to better reflect the nature of the disease as a complex chronic neuro-immunological condition in their 2025 updated edition

Was that actually the specific request? If so, I'm not surprised they rejected it. Perhaps if it had been framed around adjusting the "medically unexplained" language, adjusting the suggested treatments to align more with current guidance and adding in sections on how patients might be supported in practice, it would have stood a better chance of succeeding.

The request was this, I think https://www.change.org/p/me-cfs-changing-the-definition

We the undersigned request that the 11th edition (2025) and all future editions of Kumar and Clark’s Clinical Medicine address the following 5 points:

1) PLACEMENT: That ME/CFS is taken out of 'General hospital psychiatry' and 'MUS' (Medically Unexplained Symptoms) and 'FND' (Functional Neurological Disorder), and placed elsewhere, e.g. in the neurology section and/or the immunity section.

Since 1969, the World Health Organisation has classified ME as a neurological illness (ICD-11 8E-49). In relation to this classification, ME is fully accepted by the Department of Health and NICE. The NHS mandates ME as a neurological illness. NHS Digital

Previous editions of Kumar and Clark’s book have used CFS synonymously with ME (Myalgic Encephalomyelitis). The 2020 edition only uses the term CFS. Since the NICE Guidelines use both terms, we ascertain that CFS in Kumar and Clark also refers to ME.

2) AUTHORING: That the section is re-written by a physician and not a psychiatrist. The description of ME/CFS in Kumar and Clark was publicly criticised by a parliamentary working group, November 2006. This Inquiry stated ‘While CFS/M.E. remains only in the Psychological section of medical discourse, there can be little chance of progress.’ Gibson Inquiry Section 2.5

3) COVERAGE: That the promotion of Graded Exercise and CBT is withdrawn as a treatment for ME/CFS, reflecting the updated NICE Guidelines NG206 (2021). These guidelines demote CBT and state that GET must not be offered for ME/CFS patients. NG206 continues to state that CBT should not be offered based on the assumption that people have ‘abnormal’ illness beliefs and behaviours as an underlying cause of their ME/CFS. CBT is not a cure for ME/CFS and should not be offered as such. [NICE 1.12.28; Box 5; 1.12.32;]

4) REFERENCES: That the section should include up-to-date references including NICE NG206 (2021). That the view declaring no obvious pathology has been found, to be withdrawn, as some ME specialists have confirmed pathology in ME/CFS. Komaroff JAMA 2019

Medical educator Dr. Nina Muirhead states: ‘…there has been an exponential increase in biomedical research and an international paradigm shift in the literature, which defines ME/CFS as a multisystem disease, replacing the psychogenic narrative.’ Medical School Education on M.E. ; APPG 2022; Bateman 2021

The PACE trial (2011) which recommended GET and CBT has been shown to be unreliable. Wilshire et al. 2018

Thousands of studies have documented underlying biological abnormalities involving many organ systems in patients with ME/CFS. Komaroff

The U.S. National Institute of Health Pathways to Prevention, along with The Institute of Medicine, have concluded through 9,000 peer reviewed papers that ME/CFS is a serious physical disease, not psychological. NIH ; Institute of Medicine 2015

5) PATIENT SAFETY: That the derogatory character descriptions and inappropriate personality accusations are removed, describing ME/CFS sufferers. These are not supported by evidence. The psychosomatic view has contributed to disbelief and neglect of ME/CFS sufferers. Geraghty 2017 Kumar and Clark wrongly insinuate that a sufferer’s health will improve if they believe their illness is psychological in part. Additionally, Graded Exercise Therapy has been shown to harm sufferers. Kindlon 2011