International: World Health Organization News (news relevant to ME/CFS, Long Covid and related conditions)

The cited paper does not support this ignorant statement in any way, it's itself very speculative and a position paper on LC from people unfamiliar with ME who claim no such expertise. Might as well have made a reference to google.com for all that the citation supports it. Which makes it all the more insulting, zero effort put into what is a clearly biased and ignorant opinion dismissing something that is already a feature of real life, with many long haulers having been diagnosed with ME.

Perego mostly objects to the fatigue label so I'm OK with that, it's for the same reasons we object to the obsession with fatigue and the CFS name: it's wrong and thus unfit for purpose. It's missing decades of context that made those terms the ones used and how much work has been done trying to change this, but, again, people unfamiliar with ME who did not really make a case either way, saying more research is needed.

Ironically, I did notice a few days ago a mention from Greenhalgh talking about how difficult it is to differentiate ME from LC. Hence why the "seems different" statement being completely inappropriate when it is, by admission, impossible to tell apart from a cursory look, the literal definition of "X seems like Y".

 

Dear Dr. Edwards, this 'new way' is really grim indeed. But if "nobody of relevance" has decided that nothing much will be done, or just nonsense will, can we call these folks relevant. And this begs another question: what do folks of relevance do? they are clearly not very relevant are they if it is just trials of exercise, and multidisciplinary clinics with psychs. This augers a frightening darkness for the future of ME and (long covid) and all those who are suffering so horrifically. I noted that Hilda Bastien in her article stated that Germany seems to treat the 'disabled' quite well due to the two wars. And she is basically saying there will be many disabled from Covid. This is positively barbaric: Mars can be reached but the establishment isn't going to do much that is really relevant for Long Covid or ME.

 

I understand your exasperation but maybe we have to accept that reaching Mars is something we know how to do but treating ME and protracted illness after Covid is not.

My response was to the suggestion that more will be done for 'Long Covid' than was ever done for ME. I was suggesting that it won't be that different. The problem of how to get something useful done for ME (or Long Covid) is a different one I think.

 

To me it looks as though a) many of the current researchers (aside from Dr. Davis) are not exclusively focused on this illness, b) there isn't the will to dedicate enough money to ME ( and LC), and c) there isn't the talent (with obvious exceptions)--not enough brilliant minds working on this. But how will things look in the western democracies when the number of people on disability increases dramatically due to long covid? All this is enough to lead to serious despair.

 

It is exasperating and that is a fair summation of where we are today. However, one of the main reasons we do not know how to treat ME & protracted illness after covid is because we forgot things we already knew?

In the earlier half of the 1900s it was understood that, for those who could afford to do so, convalescing after an illness, especially a viral illness was beneficial to the patient.

These days patients aren't allowed to take the time needed to rest and heal naturally while the very people who espouse rehabilitation for the very people who become symptomatic wait until the patient has pushed themselves into chronic ill health and then, when it's far too late, have the cheek to try to teach them about acceptance. Yes, Trudge Chalder, I am looking at you.

 

Some of these "Dr" titles must be confusing in some contexts. Archaeologists are not generally known for their specialist knowledge of matters medical.

 

Dear Invisible Woman, your statement is absolutely spot on, and pertinent. This is exactly what happens! (My daughter was told by the doctors, when she said she felt tired, to simply go back to work, and that things would replace themselves. Being young, and keen in her newfound profession, she believed them and collapsed within weeks. You are so correct. I appreciate that you have highlighted this aspect.

 

Like I said:

https://twitter.com/user/status/1366847499751809031


Assertive opinions have to be justified somehow, even if there is no relation between the assertion and the citation. I assume this line came from Greenhalgh but it's interesting that the author of this patient paper was not even consulted as to whether this actually makes sense. Shows that nobody actually pays attention to this, not even in peer review. Nobody checks, nobody cares, substance is irrelevant it's all about promoting one's pet beliefs or career advancement.

 

https://twitter.com/user/status/1404467565074784259

 

Merged thread

There is an online panel happening today, hosted by the WHO, on the topic of Long Covid. From other information glimpsed elsewhere, speakers include: Nancy Klimas, Jarred Younger, Maureen Hanson, Akiko Iwasaki, Body Politic representatives and (I think) Oved Amitay from SolveME.

Not much information available other than twitter threads so far. Appears relatively good other than Simon Wessely somehow having been invited to talk, and an apparent excessive focus on the old fatigue.

Threads:
https://twitter.com/user/status/1404761534128066561


https://twitter.com/user/status/1404755499489193986

 

SOLVE M.E. CEO OVED AMITAY JOINS WORLD HEALTH ORGANIZATION SEMINAR ON LONG COVID

"On Tuesday, June 15, Solve M.E. President and CEO Oved Amitay joined other experts as a participant in the second seminar in a series presented by the World Health Organization (WHO) designed to improve our understanding of the Post COVID-19 condition and optimize the health of patients who have suffered from COVID-19.

In the first meeting on February 2, 2021, the WHO presented a framework that called for “Recognition; Research and Rehabilitation.” As part of the efforts to make this condition recognizable and recognized, the organization has been working with experts and patients around the world towards a clinical case definition. Read the official report on that meeting here. "

https://solvecfs.org/solve-m-e-ceo-...ld-health-organization-seminar-on-long-covid/

 

I'm guessing there should be a link in your post Hutan? I've had a look but can't find what you meant to link to.

https://twitter.com/user/status/1431778135364808705


My guess is that this is an early copy that Hannah has sight of, as the official WHO site points to an earlier version at the moment.

Direct link to this second edition, https://apps.who.int/iris/bitstream/handle/10665/344472/WHO-EURO-2021-855-40590-59892-eng.pdf

Extract from 2nd edition (from same page as in the tweeted image).

"Spending time in hospital, or being ill at home with COVID-19 over a long period of time, can result in a significant reduction in your muscle strength and endurance. Exercise is important for regaining your muscle strength and endurance, BUT this needs to be safe and managed alongside other COVID-19 symptoms.

You might experience worsening of fatigue and other symptoms (described as “crashing” or “relapse”) after minimal exertion. This is described in scientific terms as “post-exertional malaise”, or PEM for short. The worsening typically is felt hours or days after physical or mental exertion. Recovery normally takes 24 hours or longer and can affect your energy levels, concentration, sleep and memory, and cause muscle/joint pains and flu-like symptoms.

If you experience PEM, you need to avoid exercise and activities that cause PEM and aim to conserve your energy. If you don’t experience PEM, you can gradually increase your level of activity or exercise to improve your fitness levels"

 

Moved post

World Health Organisation: Expanding our understanding of post COVID-19 condition web series: Rehabilitation Care

"This third WHO Post COVID-19 Condition webinar on rehabilitation care, in addition to presenting the WHO clinical case definition and the development of a Core Outcome Set for Post COVID-19 Condition, will have 3 sections:

1. Introduction to rehabilitation for Post COVID-19 Condition

2. Interventions for rehabilitation

3. Models of rehabilitation care

Methods

To increase the level of understanding of rehabilitation for Post COVID-19 Condition, we will be sharing information through presentations by clinicians and researchers who have been selected based on their clinical and managerial experience, and published data. Participants will be given the opportunity to address questions to the speakers. WHO has collected, evaluated and managed conflicts of interests for all speakers.

When: Oct 6, 2021 01:30 - 03:30 PM Amsterdam, Berlin, Rome, Stockholm, Vienna "

https://www.who.int/news-room/event...d-19-condition-web-series-rehabilitation-care

 

The WHO is letting down long Covid patients
https://www.theguardian.com/commentisfree/2021/oct/17/who-long-covid-patients

The WHO delivered a suboptimal response to Covid-19; they hesitated for weeks before they declared Covid-19 a public health emergency of international concern on 31 January 2020. Unfortunately, the WHO’s slow and calcific response to long Covid is on track to repeat the same mistakes. The millions of sufferers around the world deserve better. The WHO, national governments and health systems around the world must do a better job preparing for long Covid. Failure to recognize the scope of the problem and prepare for it now risks eroding much of the progress made in global health over the last decades.​

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True, but I don't understand singling out the WHO here, it's an advisory body that does neither research nor offers medical services. It cannot force anyone to do anything, as we know with ME having been recognized for 5 decades as a neurological disease with hostile contempt from medicine. It seems to be pointing out the WHO as a "leadership" of sorts, but it's an advisory body for governments for the most part. Sure, it has programs, but not of that nature.

The simple truth is that the entirety of the medical industry and profession is failing here, on the back of decades of prior failure recognizing the nature of chronic illess, and that's too controversial to voice so let's blame the entity whose job isn't that, I guess. No question the WHO is failing, but so is everyone, so throwing stones from the glassiest of houses is very much part of the problem: this is someone else's problem/job, lots of NIMBY happening.

Let's just look at the WHO's stated mission:

The medical profession remains largely in denial over this, especially the implications with chronic illness. What is the WHO supposed to do here? It's an organization that facilitates public health efforts across international borders, but if the work isn't happening, if denial remains the mantra within the medical profession, there is literally nothing they can do. Just look at what happens at such efforts, seeing the NICE debacle. The medical profession wants nothing to do with this and can't accept the simple truth.

 

Post copied from the Long Covid in the media and social media thread

COVID-19 technical lead at the WHO. Has mentioned LC a few times before. I am not aware that the WHO has actually done anything beyond thoughts and prayers. Maybe they can't, it's not clear. On this it seems more like the UN, club members can choose to listen to advice, or not. If everyone chooses to do nothing, the WHO can't do any more.

Right now the move would be from "none" to "all". No small task. Many countries have said it plainly they plan to do nothing, not the absence of a plan, doing nothing is the plan.

https://twitter.com/user/status/1516888591867297794