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

https://twitter.com/user/status/1350121183988092929


While I can understand the motivations of these doctors, their actions are morally and ethically questionable.

Moreover, I believe that these tactics will lead to worse outcomes for both patients with ME and LC. Those of us with ME will suffer because we don't have a group of health professionals who are strongly motivated to argue against the stigma, neglect and discrimination we've all experienced for decades. They have thrown us under the bus.

Those with LC will ultimately suffer also.

ME patients have fought for decades to have PEM recognised with the result that PEM is now prominent in the draft NICE ME/CFS guidelines. We have also debunked the claims that CBT and GET are beneficial for ME, not only because the clinical trials are useless but also because such treatments exacerbate PEM.

However, in seeking to downplay the similarity between LC and ME, these doctors have minimised or whitewashed the existence of PEM in their own illness. The result is that LC patients have been landed with poor quality interim treatment guidelines. We've already seen cases where the treatments given to LC patients are completely inappropriate for people suffering from PEM.

My bet is that the much-vaunted LC clinics will end up offering perfunctory lung and heart tests for those with relevant symptoms and the rest will be palmed off for CBT and GET. Of course, these treatments will be re-badged to make them sound more acceptable to patients - perhaps mindfulness (delivered by app), breathing exercises and rehabilitative physiotherapy. The BPS brigade will be rubbing their hands together.

 

Thanks for tagging us - I composed a response! https://twitter.com/user/status/1348011488829730819


We're all a bit flat out at the moment with home schooling, supporting clinical teams through wave two, university prep and clinical work but are trying to compose a response to this

 

A transcript of the Long Covid debate in UK parliament is available here, https://www.theyworkforyou.com/debates/?id=2021-01-14a.549.1&s=speaker:25873

Carol Monaghan's speech (which was cut off as each MP only has a limited amount of time).

https://www.theyworkforyou.com/debates/?id=2021-01-14a.549.1#g553.0

 

I agree. Trying to force a distinction between Long Covid and ME will end up with people being divided into 'those who had real Long Covid, poor things, who struggled so hard but thankfully got better' and 'those who just could not hack it and couldn't sort themselves out so never got better and ended up with so-called "ME"'. That will perpetuate the idea that if you have real Long Covid there will be some special physiotherapy that gets you better quicker, even if, being nuanced, slightly slower, but if you have ME you can be forgotten.

 

We were already seeing that on Twitter with researchers and medical practitioners dismissing the recently published Longcovid symptom survey paper because a significant proportion (of those who were tested) of Longcovid patients reported negative serology results.

Karim Khan is generally supportive of ME/CFS patients, eg:

https://twitter.com/user/status/982477415304781824

 

Some valid criticism of Amy’s defence of doctors with LC wanting to separate themselves from ME/CFS but I think she is unquestionably on our side. There have been many responses to her tweet. While others have responded to criticism with blocking and accusations of malice and harassment, she has responded with sympathy, understanding, acknowledgement and agreement. I hope she will continue to listen, learn and speak out for us.

There are many other tweets in this thread but here is the end...
https://twitter.com/user/status/1350154528444854275

https://twitter.com/user/status/1350164579737890823


And Amy “liked” these tweets:
https://twitter.com/user/status/1350422380930281473

https://twitter.com/user/status/1350434114239946752

https://twitter.com/user/status/1350432921472131075

 

This is from the Dorset "COVID-19 Rehabilitation" guide. I've been browsing through some other NHS hospitals' post/long-COVID patient advice booklets; others include City & Hackney, Rotherham, Enderley, Blackpool, Leeds, Plymouth, Berkshire, and Sherwood Forest.

The advice given is drearily predictable. While there is some advice re. energy conservation, and some is common sense applicable to anyone recovering from a self-limiting viral infection, many of the leaflets emphasise graded increases in activity, and none of those that I have come across mention ME or warn of the potential implications of PEM, only referencing "fatigue". When pacing is described, it is not the strict pacing that most pwME require, and the exercise programmes given are clearly beyond what could be expected of all but mildly affected pwME.

The potential for harm is not inconsiderable.

 

The Spinoff (17/1/21): Some advice for ‘long Covid’ sufferers, from the chronic fatigue community

Nothing new here, much as the title says, but a delightful gremlin with a sense of humour has snuck in:

If you're the writer and you're reading this, please don't change it, some typos deserve to be preserved. If you must change something make it the title, "chronic fatigue community" is really annoying.

https://thespinoff.co.nz/society/17...sufferers-from-the-chronic-fatigue-community/

 

Youtube video on Long Covid Physio channel
Interview
Rob - "Experiences of Long Covid & M.E."

Rob is a musculoskeletal (MSK) Physiotherapist from Newcastle, UK. In this podcast Rob shares his story of living with Long Covid and experiences of Myalgic Encephalomyelitis (M.E.) also know as Chronic Fatigue Syndrome (CFS).

Code:

https://www.youtube.com/watch?v=KOYf1hkyg4I

@PhysiosforME might be of interest (I haven't watched it)

 

didn't know which thread to put this on:
A Practical Guide to Long-Haul Covid
Anisha Sekar

Code:

https://medium.com/@anisha.sekar/a-practical-guide-to-long-haul-covid-961707e79dba

 

They want segregation and this is what is disgusting to me. History has shown where that ends up. Some kind of “separate but equal” research and understanding between what is looking like one illness with two names for a significant subset of people.

When you look right now at all the evidence currently available on long COVID, yes I know it’s not a lot, but there is significantly more evidence that the illness many with long COVID have becomes ME/CFS if your body doesn’t recover than evidence that it’s a distinct enough illness.

SARS-Cov-2, COVID, and long COVID are not alien. Alien means something so different from anything we’ve ever seen that we have no basis for comparison. The public and scientific community tend to confuse novel, different, or new with alien. It’s not. Novel just means not substantially identical to something we’ve already seen. But for some reason the public and scientific community are pushing the narrative of alien without evidence to back it up.

 

Epidemiology of post-COVID syndrome following hospitalisation with coronavirus: a retrospective cohort study

https://www.medrxiv.org/content/10.1101/2021.01.15.21249885v1.full-text

 

Oh, no.

 

Nevermind.

Paul Garner also liked Recovery Norge stories. Seems that he turned to the BPS side.

I suspect he recovered and now attributes this to his fighting spirit, positivity, or something like that.

 

I think we should be wary about thinking of someone like Garner in terms of 'sides'. He's been through a weird experience.

Also though, rapidly lumping ME/CFS with LC at a time when a lot of those with post-viral symptoms are going to recover is going to mean that many of these people will think of ME/CFS through their own personal recovery narratives. Amongst medical professionals who suffered from forms of LC, I expect that those whose views go on to have the most influence amongst their colleagues will be those who recover. When the biopsychosocial model has long been promoted to medical professionals to explain how patients can recover, I expect that this framework would often come to be used to help understand their own experiences (and it may help do so). Politically, I see more potential downsides to rapidly lumping LC with ME/CFS than I do upsides.

I mentioned this in May:

 

The way I remember it, many or even most people with prolonged symptoms after infection will recover within six months. A small portion will recover within a year. An even smaller portion within 2 years. And then the chances of recovery become very low.

In LC it will presumably follow a similar pattern.

That some people don't know this and go on to have strange beliefs about what led to their recovery is their problem.

I'm more worried about unnecessarily demoralizing LC patients by telling them they'll be sick for their entire life when that really is not certain. They deserve an honest answer.

 

By the same logic, it would seem like we shouldn't link Epstein Barr Virus or other infections with ME/CFS.

Separating ME/CFS from infectious onset seems a very risky road to go down as it makes biopsychosocial/psychological theories more likely to be posited, it would seem. Nor does it seem a good way to progress the science.

 

Yeah, definitely. There's no way that LC patients should be told anything like that they'll be sick for their entire life.

I'm not saying it should be clearly and permanently separated, but that we should be cautious about anything implying that, for example, the sorts of response to ill health patients who've been ill for a couple of years find helpful is also likely to be helpful for those who've recently started struggling with post-viral symptoms. Even for those who've been ill for a longer time seem to have quite varied experiences so advice can often be problematic, and I expect that this problem is even greater for those more recently ill. Particularly with LC, where we know even less than with other post-viral symptoms.

 

For me the issue is about forcing a distinction, forcing a distinct label and entity, and the consequences when it comes to research funding. All PVFSs have similar recovery distributions.

It’s not being dishonest to LC suffers to say to them the syndrome many of them have is yet another clinical presentation of PVFS, that there is a distribution of recovery time and percentage of people who recover and who don’t, and that all PVFSs known to date and ME/CFS share all the same primary symptoms, there is no magical “conversion” to a distinct ME/CFS disease at some timepoint it’s just a percentage of people don’t recover.