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

[Hutan]

Notification of a PhD opportunity in Edinburgh has been moved to the Recruitment subforum:
January 2021 United Kingdom: PhD opportunity - ME/CFS & Long Covid: Genetics, Truth and Reconciliation

 

[Art Vandelay]

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.

 

[PhysiosforME]

First paragraph and separate link from above tweet (given that some people won't be able to view a tweet).

No mention of ME or any name variant.

Returning to physical activity after covid-19

https://www.bmj.com/content/372/bmj.m4721.full

I've tagged Physios for ME in the Twitter thread itself.

Thanks for tagging us - I composed a response!

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

 

[Andy]

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).

I congratulate Layla Moran on securing this afternoon’s debate. For the past three years, I have been involved with individuals living with myalgic encephalomyelitis, a post-viral condition triggered by a virus such as flu or, in some cases, severe acute respiratory syndrome. Knowledge of post-viral conditions, particularly with regards to activity management, is essential for the many people now living with long covid. As early as January last year, some people expressed concerns that this mysterious new coronavirus could produce similar post-viral effects. However, the sheer numbers affected by long covid is a serious health challenge.

In addition to listening to and—crucially—believing and supporting people with long covid, health professionals should be providing guidance on symptom management. I am pleased to see that the National Institute for Health and Care Excellence moved quickly to provide guidelines for long covid, and thankfully it has cautioned against the use of graded exercise therapy. It is surprising to find a guideline recommending exercise testing. Exercise testing in people who may have an undetected cardiac pathology clearly carries a risk. In addition, the NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. That is a serious omission that requires urgent attention.

Advice on symptom management cannot be left to charities and support groups. Instead, we should be looking at how that can be delivered in primary care, with the help of, for example, properly trained community physiotherapists. There is a need for health professionals, employers and wider society to recognise that recovery from a virus takes time. Employers must identify tasks that individuals can continue to carry out, and that might be in a different setting from what they are used to doing. The Government must ensure that there is proper financial support for those affected. It may be that these people take months or even years until they start seeing improvements in their health, and we must make sure that the support system can be just that during these times.

Today, we had a study by Public Health England that shows that those who have had covid will have immunity for about five months post-infection. Those who are living with post-viral conditions such as long covid or, indeed, ME, should therefore be considered vulnerable beyond the five months and prioritised for vaccine. Finally, it has taken decades of campaigning, largely due to the lack of belief—

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

 

[Jonathan Edwards]

Moreover, I believe that these tactics will lead to worse outcomes for both patients with ME and LC.

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.

 

[Snow Leopard]

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"'.

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.

Sorry I couldn't work out how to embed a retweet so I've taken a screenshot. Karim Khan retweeted part of Peter Whites commentary on the talk.

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

 

[Robert 1973]

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...



And Amy “liked” these tweets:

 

[Nightsong]

Horrible. Predictable. Still horrible.

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.

 

[Ravn]

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:

Secondly, pacing is central to not crashing (identified as an exasperation of symptoms) and can help to lessen the effects of post-exertional malaise.

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/

 

[Sly Saint]

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).

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

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

 

[Sly Saint]

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

Helpful concepts and labels
These symptom clusters and syndromes provided a jumping-off point for treatment and further research:

• POTS (postural orthostatic tachycardia syndrome) explained why my heart rate increased 40+ bpm on standing, as well as the brain fog.
• ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) explained, well, the fatigue, and specifically the delayed reaction to overexertion called post-exertional malaise. If I did too much on a Monday afternoon (like, I don’t know, wash my hair and change the litterbox), I’d feel fine immediately after, but on Wednesday morning I’d be bedbound. Note that ME/CFS and POTS have a pretty high comorbidity.
• Dysautonomia is an umbrella term for autonomic nervous system issues including POTS.
• MCAS (mast cell activation syndrome) provided another explanation for brain fog, as well as feeling allergic.
• The NAD+ hypothesis posits that Covid depletes NAD+ reserves, which leads to mast cell activation and other disruptions. (This article is worth a read.)
• Spoon theory and energy envelope were useful concepts useful when rationing energy and explaining *waves hand* all this to other people

Long Covid resources
These groups have been invaluable to me in understanding long Covid:

• Body Politic Slack group (I prefer Slack to Facebook, but there are equivalent Facebook groups as well)
• ME Action
• Dysautonomia International
• Study of long Covid

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

 

[leokitten]

A further point about that tweet from Amy Small. Its confirmation of something that we all know from experience, that ME patients are discriminated against, and that members of the medical establishment are aware of that discrimination and are taking steps to distance their brand of post-infection chronic illness away from the wrong sort to avoid that discrimination.

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.

 

[Andy]

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

Objectives The epidemiology of post-COVID syndrome (PCS) is currently undefined. We quantified rates of organ-specific impairment following recovery from COVID-19 hospitalisation compared with those in a matched control group, and how the rate ratio (RR) varies by age, sex, and ethnicity.

Design Observational, retrospective, matched cohort study.

Setting NHS hospitals in England.

Participants 47,780 individuals (mean age 65 years, 55% male) in hospital with COVID-19 and discharged alive by 31 August 2020, matched to controls on demographic and clinical characteristics.

Outcome measures Rates of hospital readmission, all-cause mortality, and diagnoses of respiratory, cardiovascular, metabolic, kidney and liver diseases until 30 September 2020.

Results Mean follow-up time was 140 days for COVID-19 cases and 153 days for controls. 766 (95% confidence interval: 753 to 779) readmissions and 320 (312 to 328) deaths per 1,000 person-years were observed in COVID-19 cases, 3.5 (3.4 to 3.6) and 7.7 (7.2 to 8.3) times greater, respectively, than in controls. Rates of respiratory, diabetes and cardiovascular events were also significantly elevated in COVID-19 cases, at 770 (758 to 783), 127 (122 to 132) and 126 (121 to 131) events per 1,000 person-years, respectively. RRs were greater for individuals aged <70 than ≥ 70 years, and in ethnic minority groups than the White population, with the biggest differences observed for respiratory disease: 10.5 [9.7 to 11.4] for <70 years versus 4.6 [4.3 to 4.8] for ≥ 70 years, and 11.4 (9.8 to 13.3) for Non-White versus 5.2 (5.0 to 5.5) for White.

Conclusions Individuals discharged from hospital following COVID-19 face elevated rates of multi-organ dysfunction compared with background levels, and the increase in risk is neither confined to the elderly nor uniform across ethnicities. The diagnosis, treatment and prevention of PCS require integrated rather than organ- or disease-specific approaches. Urgent research is required to establish risk factors for PCS.

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

 

[tmrw]

Oh, no.

 

[Hoopoe]

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.

 

[Esther12]

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:

With examples of post-viral fatigue it seems that most go on to eventually recover, while some do not. A potentially disadvantage (for us) of people adopting a label like PVFS/ME/CFS early on is that we could then be flooded with anecdotal reports about how doing [whatever they were doing at the time] led to recovery from PVFS/ME/CFS.

Hopefully those suffering long lasting symptoms from COVID-19 will be particularly likely to go on to recover, but given the problems surrounding PVFS/ME/CFS research, I can see that almost any outcome could end up being viewed in a way that causes problems for other PVFS/ME/CFS patients. We know that some less than impressive people with a history of spin are now getting funding for researching this area.

 

[Hoopoe]

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.

 

[Dolphin]

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.

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.

 

[Esther12]

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.

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

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 theories more likely to be posited, it would seem. Nor does it seem a good way to progress the science.

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.

 

[leokitten]

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.