News about Long Covid including its relationship to ME/CFS 2020 to 2021

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Discussion of BMJ articles from Paul Garner on this thread https://www.s4me.info/threads/paul-garner-covid-19-bmj-articles.15629/

Another excellent article from prof. Paul Garner.

BMJ Paul Garner on long haul covid 19 - Don't try to dominate this virus, accommodate it

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).

Did I? I turned to Cochrane, the first stop for reliable current medical thinking and evidence. “CBT facilitates the identification of unhelpful, anxiety‐provoking thoughts, and challenges these negative automatic thoughts and dysfunctional underlying assumptions”. Crickey, I thought. Having recently suffered a 3-day relapse after a 10-minute bicycle ride, I peeked at the Cochrane review of “exercise as treatment for chronic fatigue:” 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.
 
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Not sure whether this has been posted. Hard to keep track.

#MEAction
NIH DIRECTOR: LONG HAULERS “DECIDED TO TAKE MATTERS INTO THEIR OWN HANDS”

NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results. #MEAction reported on the survey results in May and has partnered with Body Politic in several efforts, including the creation of an ME/CFS seminar for long haulers.
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https://www.meaction.net/2020/09/03/nih-director-long-haulers-decided-to-take-matters-into-their-own-hands/
 
We have heard your message about long covid and we will act, says WHO

https://blogs.bmj.com/bmj/2020/09/0...ge-about-long-covid-and-we-will-act-says-who/

A few weeks ago, we wrote a BMJ Opinion piece about the long term impacts of covid and called for patients’ experiences of long covid to be included in any initiatives to explore the experience of “long-haulers.” This opinion piece foregrounded a video called “message in a bottle” made by the LongCovidSOS patient group, which caught the attention of the World Health Organisation’s covid-19 response team. The LongCovidSOS team were then invited to organise a meeting. This opportunity to present the existing evidence and highlight patients’ experiences of having Long Covid took place on Friday 21 August 2020. The meeting was attended by Maria Van Kerkhove, (WHO Covid Technical Lead) and Janet Diaz (WHO Head of Clinical Care) from the central WHO team.
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As doctors we emphasised the following points:
  • In our view, long covid needs to be recognised as a separate disease entity to acute covid, as the symptoms persist from the onset, are relapsing and last for months.
  • Epidemiological studies counting the number of people affected need to be done.
  • Long Covid is not “mild.”
  • There is significant pathology that needs to be ruled out.
  • Many patients have experienced a delay in being seen, believed, and medically assessed, and this needs to improve.
  • Cardiac disease and other major organ disease need to be excluded before rehabilitation begins.
  • We need to consider the occupational health implications of long absences in the work force.
  • Patient experience needs to inform research and guideline development.
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Covid-19 is a new disease and the long-term effects have taken the research and medical communities by surprise. We strongly believe that it is only by listening to peoples’ experiences carefully and compassionately that solutions will be found.
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This is a good message and the emphasized points are the right approach. But the exact same needs to apply to the broader category, not just the COVID-19 subset, which to this day remains a blip compared to the whole chronic illness patient population. This does not only mean ME/CFS but the whole chronic illness superset. Which, yes, probably amounts to well above 100 million, something medicine is completely unequipped to deal with. Denial has consequences.

Had this been done decades ago we would not be in this mess. Medicine should always systematically take patient experience into account, it should not be a special deal. This is almost exactly the same strategy the ME community has been pushing for decades. There are lessons to learn from that, that something that was explicitly rejected with prejudice is now the obvious thing to do. This is an incredible level of failure.

Because this advice directly conflicts with the past several decades of increasing obsession with imaginary psychosomatic disorders, which are entirely incompatible with applying this framework. The entire BPS/FND/MUS ideology is mutually exclusive with making any progress. One has to give, and only one has the chance to actually create productive outcomes, while the other is a completely delusional belief system with catastrophic consequences. Should be an easy choice, but the wrong choice has been made decades ago and reaffirmed constantly ever since. Let's fix all of this moving forward, including correcting enormous mistakes that are still ongoing to this day.
 
Covid-19’s painful, lingering legacy

https://www.theaustralian.com.au/we...y/news-story/e0b9681eea62a31dd0be4dfe6242c47a

A growing ‘phantom army’ of Covid-19 patients are plagued by mysterious symptoms months after the virus has left their body. What’s going on?
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Good article overall, but this:
Dore has been involved in clinical and research work in the Hepatitis C sector for 20 years and has seen his share of stigmatised patients. He confesses to being nonplussed by the stigma around Covid-19 patients, many of whom were reluctant to be identified for this story. “Why would people feel a stigma in terms of a disease which is not related to their lifestyle, something that’s affecting people broadly in the community?” he wonders. He can only put it down to “the whole experience of being put into isolation and being anxious about spreading the infection to others”.
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is fully explained by this:
Until recently, Covid long-haulers felt they were shouting into the void, their symptoms dismissed as psychosomatic or a result of anxiety. They formed online communities to compare notes: Facebook groups such as Long Haul Covid Fighters, Long Covid Support Group and the formidable Body Politic COVID-19 Support Group, which conducted its own “patient-led research for Covid-19”, an informal survey of 640 members that unearthed a bewildering array of systemic long-term impacts.
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Denial has consequences, generally but especially so in medicine. This type of chronic illness is literally dismissed as "lifestyle" and "behavioral", this is taught at medical school and ruthlessly enforced in practice. This stigma is entirely created and enforced by medicine, also in control of ending it. Belief in childish psychosomatic nonsense has serious life-ruining consequences.

We don't like those consequences. How about ending this nonsense once and for all? After all, it has brought nothing but death and misery, all the for the low low price of... trillions in economic losses, distilled in a few thousand mediocre careers. A very poor set of choices.
 
Struggling with post-COVID-19 syndrome in a First Nation with limited health services

https://www.cbc.ca/news/indigenous/covid-syndrome-symptoms-1.5712151

Ikramuddin said she saw chronic fatigue syndrome in patients who recovered from the 2009 H1N1 influenza pandemic.

"I had a few patients that I have been following for a couple of years and these patients have extreme fatigue that needs to be managed in a special way," she said.
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One of the rehabilitation treatments she and her colleagues are employing on recovered COVID-19 patients involves graded exercises — setting a baseline and then increasing that activity in increments.

"We find this has worked with chronic fatigue syndrome," she said.
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Gonna go on a limb here and suggest "has worked" means "the patients did not come back". :banghead:
"In a larger community, you have rehab centres that take post-COVID people to try to get them to exercise and to stimulate them…. You don't have rehab there, in most of these communities, and that is a problem," said Banerji.
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Where, in any of this, comes the absurd idea that people need to be stimulated to exercise? There is literally nothing that suggests that beyond the fact that it is the underlying assumption, baseless and easy to debunk.
 
This obsession with exercise is disturbing. There is a PACE exercise program "Progressively Accelerating Cardiopulmonary Exertion" developed by Al Sears in the US, so there might misunderstandings are all over the net depending which country?

Be Strong, in other words literally kill yourself :emoji_rolling_eyes:
 
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From 3. Sept.

BMJ Living with covid-19 by Fiona Godlee

While most people recover quickly and completely from the virus, stories of persistent and troubling symptoms have now moved from anecdote to the evidence of crowd sourced cohorts. Reports suggest that one in three people have not fully recovered several weeks after initial illness. A smaller but still substantial proportion have symptoms and difficulties that persist for months. These are not people who have been seriously ill in hospital, whose difficult journey to recovery is better understood.2 These are often physically fit, younger people who report persistent exercise intolerance, breathlessness and cough,3 anxiety, palpitations, and poor concentration.
 
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