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

https://twitter.com/user/status/1296825071986769920


https://twitter.com/user/status/1296826543822516231

 

Quick response from MEAction.

https://www.meaction.net/2020/08/21...gets-it-wrong-on-post-covid-treatment-and-me/

 

The WHO really should have to face the fact that they have had 50 years to do something about it and it is this failure to act that lead us here.

Enough of no one having to face any responsibility for what they failed to do. Medicine has had everything at their disposal for decades to do something and it was deliberate failure that left us unprepared for yet another disaster. All the evidence overwhelmingly supported the need to do something and take this seriously. This was willful failure based on ridiculous belief systems, exactly like HIV denial is to AIDS.

At some point professionals have to be held accountable. Enough of this "oh we didn't know poor us this is all brand new" crap. Willful ignorance is not an excuse.

 

DR Hillary has always been terrible with anything M.E. And I don't rate him as a doctor generally.

 

I hate talking about my experiences publicly and some people recognise me from my name here, hence the anonymous user name - but I really like this point and want to add something to it.

Once, I was visited at home by a consultant liasion psychiatrist (who had all the usual views). I explained my problems but it just felt as if he saw me as a specimen he was viewing under the microscope, and it was impossible for me to add anything to his knowledge. I also got the impression that he was sure that neither he nor any of his friends or colleagues would respond to the illness the way I did (he was later explicit it was my fault).

Some time later I was lucky enough to talk to a neuropsychologist, about how outraged I was by this attitude. She sympathised (genuinely), but also said it wasn't the first time she had heard this sentiment from a patient. And I know I was her only ME patient - she saw neuro patients, mainly. Maybe lack of empathy, and ignoring what patients say, isn't so unusual.

While I'm getting things off my chest, I was also handed an early word-processed CBT manual written by Trudy Chalder and Mary Burgess (the person giving it to me seemed to think they were handing over a sacred text). It was as if the authors were on a different planet - had they ever met, or listened to a patient with ME/CFS?

I feel better for that, thanks.

 

I confess to not knowing much about neuropsychology and have given a rather unflattering opinion on another thread. I suppose it's not surprising that I might be just a little suspicious of psychology cozying up to neurology. I see neurology as a discipline that can potentially unlock new information and discoveries of brain function that could be very useful in helping to reveal the facts about how things work and their interconnection with other systems in ways that can lead to real world better outcomes for neurological illness as well.

I imagine psychology as co-opting the current technologies of neurology because they are at this point amenable to a wide range in interpretation. It would be good to be proven wrong on this or at least that only some small and marginalised sub-set fit the described category.

Given what we are seeing with some of the post-covid cases it seems to me that neurology is an important specialty that needs more resources and bright minds to move discoveries forward for this and other medically unexplained health problems.

 

I know that psychology has been rubbished here a lot, but it does contain a bit of sense - shame about all the rubbish that is mixed up in it. I did psychology for a year as part of my Masters degree - the rest was science - and approached it all with an open mind, but made my own mind up what was sensible and what wasn't. It's a shame that it's not easy for everyone to do that. Maybe they should have studied something else...

 

The problem is there should be an agreed upon standard as to what is 'rubbish or not' in psychology. And I don't see that happening. So now everybody gets to decide for themselves which isn't very scientific.

 

I wonder about the latter point myself. If they had just one patient proof-read such documents, they would be written very differently.

 

It is entirely possible they had not. In 1989 they recommended that for a greater understanding patients might read the Stone et al paper and the Straus paper, both from 1988. The Stone paper, which applied Edwards dogma, was said to be on Effort Syndrome, which included ME, but also other diagnoses. In the disastrous Wessely, David, Butler, Chalder paper of 1989 they specifically referred approvingly to the schedule of the 1986 Edwards paper, also on Effort Syndrome. This blithely stated that you can cure your effort syndrome if you really want to.

How careless it was of patients not to have read that paper, located as it is in Acta Med Scand (suppl), which was , of course, readily available.

How they must wish Sci-hub had been closed down.

 

The danger here is that any rubbish that gets through becomes dogma.

 

If only we had the right friends in the right places it's possible those with Long Covid might not be having such a hard time at the moment...
https://twitter.com/user/status/1296830301746991104

 

I am planning to write a research blog about the link between Long Covid and ME/CFS, and am hoping the smart people here will help me out.

I must have missed at least 1000 posts since I last kept up with this thread. There's no way I can read all of them so if I outline what I think I know, perhaps people could point out important errors or omissions? Thanks!

The two points I want to highlight are significant doctors who have highlighted similarities between Long Cove it and ME/CFS, and ongoing or imminent research studies which should identify if long covid really is or includes ME/CFS.

Significant doctors to make the connection are Anthony Fauci, Avi Nath, Paul Garner and Charles Shepherd.

All the studies I found that include only (or substantial numbers of) non-hospitalised long covid cases are all based in the US:

— the NIH intramural study covered by Brian Vastag (mentions mecfs)

— the OMF study (mecfs focus)

— the Steven Deeks University of California study

— another study, mentioned in Science magazine, Akiko Iwasaki, a Yale immunologist, though I haven't been able to find any other reference to this.
https://www.sciencemag.org/news/202...ovid-19-s-lingering-problems-alarm-scientists



Thanks for any help

 

The Economist (free to read): When covid-19 becomes a chronic illness:
https://www.economist.com/science-and-technology/2020/08/22/when-covid-19-becomes-a-chronic-illness

Screenshots in case anyone can’t access:

 

@Simon M – my brain's not capable of retaining much information these days, but Alain Moreau at Montreal is one other more doctor who's made the link:

“With this very severe COVID-19 disease, where we’re now dealing with millions of people suffering from it worldwide, the question is not if [some] will develop ME/CFS—it’s how many.” (The Scientist)

https://www.the-scientist.com/news-...-trigger-chronic-disease-in-some-people-67749

 

Compare the willingness of the WHO to reach out to and engage with Long Covid advocates with the struggle we have had to maintain channels of communication with WHO/ICD Revision, who, inter alia, unaccountably removed the three G93.3 terms from the ICD-11 Beta draft for over 4 years, making it very difficult for stakeholders to monitor, input or comment on proposals before finally restoring the terms to the Beta draft in March 2017; and then spending nearly three additional years undertaking a literature review before deciding (in November 2019) how to classify these terms for the forthcoming edition [1].


1 For the status of PVFS, BME and CFS in ICD-11 see my August 2020 report (from page 3):

Update on classification and coding of PVFS, ME and CFS for ICD-11: https://dxrevisionwatch.files.wordpress.com/2020/08/update-on-classification-of-pvfs-me-cfs-for-icd-11-august-2020.pdf

 

@Simon M If memory serves, Alain is involved in 5 recently funded Long Covid / ME studies - I think he said he was PI on 4 of them.

 

For several months, now, I have been monitoring the ICD-11 Orange Maintenance platform Proposal Mechanism for any proposals submitted by WHO, themselves, or by advocacy groups or by other parties for a proposal for a specific code or codes or "Postcoordination" codes for post COVID-19 sequelae.

I am also monitoring the NHS Digital proposal platform for SNOMED CT UK Edition. (I don't have access to the SNOMED CT International Edition's proposal platform.)

Nothing so far. But I will update should any proposals be submitted for ICD-11 or for SNOMED CT UK Edition.