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

* Not due to the persistence of the virus *in the blood*.

 

I have now highlighted that quote elsewhere:
https://twitter.com/user/status/1309939185067929602

 

That "in the past" line does not inspire confidence things will change any time soon. Bit like saying we had problems with pandemics in the past. True. But we very much have those problems right now.

It's not just the "now" but especially the "ongoing" aspect that is the concern here. The state of discrimination against ME, and chronic illness in general, is still very much maximal, at its very worst, thanks to the rotten BPS/MUS/FND ideology. This is not going away until the failure is acknowledged, fixed and the entire system of health care reformed to make sure this never happens again. That will require making a lot of people very angry, and some to be very retired. It will require actions, decisions and actual plans with actual funding.

Hope is not a plan. Never is. We can testify to the fact that no matter how much time you allow for wishful thinking to magically produce results, it never will.

 

https://twitter.com/user/status/1309876243454660609


(before, and now, and for the foreseeable future)

https://twitter.com/user/status/1309876244348108800


https://twitter.com/user/status/1309876245317013510


Dr Lambert was the primary research on one of the long Covid studies and has been quoted on many articles. Comment on that study: https://www.s4me.info/threads/possi...covid-19-long-covid.14074/page-63#post-280605.

 

That hasn't filtered down to doctors in Australia. People with long-covid who have joined ME groups here are telling us they've been told by doctors that they're deconditioned and need to exercise.

 

Merged thread

As Their Numbers Grow, COVID-19 “Long Haulers” Stump Experts

This is a journalistic piece regarding Long COVID which discusses symptoms and experiences of patients living with Long-COVID including Dr Mady Hornig who researches ME as well.

The article also includes the issue of medical gaslighting.

Do not miss the comments at the bottom from physicians, one of which is VERY good but a few are really bad as well.

Dr Hornig if you are reading this, i am sending my best wishes.




Link to article

 

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) – An Update
By Axel F. Sigurdsson, MD, PhD | September 26, 2020

Chronic fatigue syndrome (CFS), also termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness that has attracted a good deal of attention lately, mainly because of a proposed relationship with COVID -19.

https://www.docsopinion.com/myalgic-encephalomyelitis-chronic-fatigue-syndrome

 

I'm glad doctors are finally including dysautonomia with ME. It provides other doctors a better understanding on how debilitating ME is without focusing on the 'mysterious, fatigue . . .' lingo.

 

Not half bad. It's missing out a lot of the disease burden and overemphasizes excessive exercise as a trigger for PEM, missing out essentially on the severe half of the patient population who struggle with daily functioning, not even close to be able to even attempt vigorous exercise.

The section on treatment is bad, but in line with current research so not too much to complain. A bit too much emphasis on "high-functioning individuals". Thing is, people who aren't high-functioning don't mention it. I don't think so much should be made of this other than as a significant factor in pushing through the disease.

Should be better. Could be much worse. But it stays mostly within reality, which is nice.

 

Haven't bothered watching. Some comments that the predictable stuff about anxiety and CBT/GET is there. I'm not expecting the RSM to do anything good so not surprising. Doubtful there's anything worth much here.

https://www.youtube.com/watch?v=tmzmx3LwEjY

 

Meanwhile in "stuff pwME have been saying literally for years and has fallen entirely on deaf ears":

https://twitter.com/user/status/1310154995250143233


Rejecting reality and substituting your own is not serious work. The obsessive focus on fatigue has never made logical sense. Magical thinking is incompatible with science, part 2926296.

 

https://twitter.com/user/status/1310298071545393152

 

Post COVID-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy: a case report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7502253/

Case report but nonetheless interesting.

Thread for this paper is here:
Post Covid-19 syndrome associated with orthostatic cerebral hypoperfusion syndrome, small fiber neuropathy and benefit of immunotherapy, 2020, Novak

 

I haven't found a link in the forum to the 'New Free Leaflet: The ME Association Guide to Post-Covid Fatigue Syndromes and Post-Covid ME/CFS' so thought I would share here.
Published 22nd Sep 2020. 24 page article.
Introduction and link to the pdf here...
https://meassociation.org.uk/2020/0...ovid-fatigue-syndromes-and-post-covid-me-cfs/

 

Not sure what place this publication in terms of journalism has but people talking about it is probably a good thing no matter what. Front page. Decades ago I think ME/CFS made the front page of Newsweek because of the Lake Tahoe outbreak. How much could have been done if the sabotage hadn't happen? It's maddening to think of the millions of lives lost to this.

 

'I had to leave the nursing job I love because of long-Covid'

https://www.telegraph.co.uk/health-fitness/mind/had-leave-nursing-job-love-long-covid/

From the PACE trial manual: "The essence of CBT is helping the participant to change their interpretation of symptoms and associated fear, symptom focussing and avoidance. Participants are encouraged to see symptoms as temporary and reversible and not as signs of harm or evidence of fixed disease pathology. In this way it is anticipated that they will gain more control of their lives, as they, and not their symptoms, dictate what they do."

"The bastards just don't want get better"

Weird how the exact opposite was argued endless for decades. How odd.

A reminder how the alternative claims were made as part of the bullying through of the BPS model:

https://meassociation.org.uk/2011/0...n-abc-national-radio-australia-18-april-2011/​

Richard Horton: We were delighted to get this trial, it was eagerly awaited. It was a remarkable study because the investigators stepped back and were willing to do an experiment comparing conventional treatments for chronic fatigue, cognitive behavioural therapy for example against a treatment which was very much endorsed by parts of the patient community but very sceptically received by the more scientific community and that was the adaptive pacing therapy. So they were really stepping back and comparing two philosophies, not just two treatments, two philosophies of what chronic fatigue syndrome was.

Norman Swan: In other words whether or not you can be rehabilitated to some extent and whether or not you should actually just adapt to the condition.

Richard Horton: Yeah, I mean adaptive pacing therapy essentially believes that chronic fatigue is an organic disease which is not reversible by changes in behaviour. Whereas cognitive behaviour therapy obviously believes that chronic fatigue is entirely reversible and these two philosophies are kind of facing off against one another in the patient community and what these scientists were trying to do is to say well, let’s see, which one is right.​

 

I’ve not kept up with this thread recently so apologies is this has already been posted:

BBC Radio 4, 11am Tuesday, 29 September: Long Covid, presented by Adam Rutherford:
https://www.bbc.co.uk/programmes/m000mzms

BBC Blurb:

One of my concerns about linking long-covid with ME, is that it may be that most people will slowly recover from these symptoms within a few months, as many people with persistent post-viral symptoms do, and as Adam appears to have done. If that is the case then it may be quite different from ME/CFS and therefore unhelpful to link them.

I appreciate that others may feel differently about their experiences but, even though I was given some very bad advice in the first couple of years I was unwell, I still think it’s unlikely I would have recovered if I had been given the best advice. If I had the type of illness where I felt well if I rested sufficiently and only felt unwell if I did too much then I might well feel differently, but since I’ve became unwell in 1992 I have felt absolutely rotten every day, and it’s never felt like resting and pacing is going to make me better – only to feel less awful.

If the natural course of long-covid is a slow gradual recovery then I fear that many long-haulers, including scientists and doctors, may be inclined to falsely attribute their natural recovery to whatever they have tried – whether that is CBT, GET, pacing, anti-virals, reflexology or healing crystals – and infer that a similar approach should work for ME/CFS. That could be really unhelpful for us. [edit to add: I’m not suggesting that promoting pacing is unhelpful. I just think it’s unhelpful if people think of it as a treatment rather than just a sensible approach to management, which may aid recovery if that is the natural course.]

It will be interesting to see who is on this programme and what is said. I suspect we may end up with a lot of muddled thinking and blurred definitions (eg SW claiming on Twitter that “‘pushing through’ is not part of GET”) similar to the webinar with Miller and Chew-Graham in the RSM long-covid webinar.

https://twitter.com/user/status/1306534615276978178

https://twitter.com/user/status/1309856351409987586

https://twitter.com/user/status/1309872990620913665

https://twitter.com/user/status/1309984133226074112

 

On the question of "pushing through", or not, I seem to recall looking to see what was said at the outset. I could not find any references, as such, to pushing through, but what was indicated was that periods of rest should be built into the schedule or timetable and that rest should only be taken at those times.

The implication of that is clearly that symptoms should be ignored until the timetable allows for rest. That might reasonably be interpreted as "pushing through".

 

I feel like this too. I have never had a single hour where I have felt 'well' since I first had the symptoms of M.E. (mine also began in 1992). I have never been pressured to undertake either GET or 'CFS style' CBT, although over the years I have tried to do a lot more than I should have, most often out of necessity as a single parent without family support.