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

[rvallee]

This runs contrary to the 2005 Dubbo study, where post-infectious development of ME symptoms was linked to self-reported symptom severity.

The biggest weaknesses of those past studies is that they are very biased towards the sickest cases. Considering how difficult it has been in the context of COVID to include mild, even asymptomatic cases, I don't see how past studies in different contexts could have even considered this possibility. Same with SARS. Considering COVID, it's actually very likely that many cases were not the typical ARDS profile and were simply never considered SARS. SARS also featured extensive neurological symptoms and it's likely that it also caused different illness profiles, neurological, dysautonomic, GI or otherwise.

So studies like Dubbo would have been only confirmed cases with medical follow-up. Most mild cases of COVID had no follow-up. Almost all mild cases of mild infectious disease get no medical follow-up. Many cases are so mild that they would not even have been considered COVID had it not been for the community organizing.

Honestly almost all past research on this topic is flawed to the point of uselessness because of assumptions about infectious illnesses that have now been completely debunked. There is no reason to assume that COVID is unique in having such a wide range of severity and symptoms, leading to most cases never even being seen in a clinical setting. Not to say they are 100% incorrect but they rely on assumptions that clearly have little to no validity.

 

[rvallee]

To think, it was to avoid this sort of quackery that "Campaign against Health Fraud" was set up. But then they turned against the patients. Because, if cancer patients could accept a psychological component to their illness, why couldn't ME patients. The world is mad.

Somehow I doubt that cancer patients would agree to the proposition that since psychological therapies "helps" "some", nothing else should be done and they should just accept they have psychological boo-boos.

Weird how context changes things. Almost like... context matters? What?!

 

[rvallee]

But no one is protected against disease. It is disturbing how society treats the sick - and with ME you get the extreme version. If you are not able to lift the water glass to your mouth, talk or sit upright, you have no choice anyway. No one chooses such a life. I think we are approaching a social rights struggle, which has not quite reached the surface yet. It's a battle we need.

Hell. Yes.

 

[Kalliope]

Live Science - 'We just had no answers': COVID-19 'long-haulers' still learning why they're sick

"Long COVID is a whole spectrum of different conditions," said Paul Garner, a professor at the School of Tropical Medicine in Liverpool, England, who also developed his initial COVID-19 symptoms in March. But one common refrain is a sense of overwhelming fatigue.

Garner is among long-haulers who experience such fatigue as one of their main symptoms; some have compared the condition to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), the exact cause of which is unknown.

...


In the case of the fatigue she's experienced after contracting COVID-19, the sensation doesn't set in like typical tiredness, which comes on gradually, Dr. Mady Hornig, a physician-scientist at the Columbia University Mailman School of Public Health, told Live Science. "From my own experience, it's more like you're an electrical device and every once in a while someone pulls out the plug," she said. Hornig developed symptoms of COVID-19, including a fever and cough, back in April. Now, "I've had to be on a toddler's time table with self-enforced rest," she said.

But could a COVID-19 infection really trigger the onset of ME/CFS? Hornig said it's possible, given that other viral infections have been linked to the syndrome. For instance, an estimated 10% to 12% of people with infectious mono, caused by the Epstein-Barr virus, later develop a chronic course of ME/CFS, she said.

 

[Kalliope]

SKY News - Coronavirus: More than half of COVID-19 patients experience ongoing fatigue, study finds

Dr Charles Shepherd, who works as a medical adviser for the charity, says the government is being slow to act.

He said: "There's a tremendous amount that needs to be done and we are being very slow in getting to deal with this.

"We've been dealing with people with post-viral fatigue syndromes for 40 years, it's very common after any infection, but when it goes on for longer than three or four weeks you start to wonder if something more serious is going on."

He continued: "We've got almost this tsunami of people that were previously strong adults who are just not getting better and general practise, primary care, is just not equipped for these people.

"I think they really are floundering as to what to do with these patients. The charity sector is obviously picking up and providing a great deal of information but these people need a lot more help."

According to Dr Shepherd, it's not a question of greater financial support.

He said: "I don't think it's purely a question of money, if we got the right kind of online support from the NHS, better online resources. Community physiotherapists could be helping people a lot more, as could occupational therapists. There's a lot more could be done, it's a question of coordination."

 

[Arnie Pye]

"I think they really are floundering as to what to do with these patients."

That will be because fobbing the patients off, gaslighting them, and blaming them for their woes is not going to cut the mustard any more. But most doctors have no other tools to help them deal with the sufferers.

 

[Arnie Pye]

My emphasis.

But no one is protected against disease. It is disturbing how society treats the sick - and with ME you get the extreme version. If you are not able to lift the water glass to your mouth, talk or sit upright, you have no choice anyway. No one chooses such a life. I think we are approaching a social rights struggle, which has not quite reached the surface yet. It's a battle we need.

Some societies and cultures are now saying that certain things many people take for granted in Europe as rights are now being declared to be "privileges" instead. [I'm looking at you, USA.) I consider voting and healthcare to be rights not privileges, but many Americans seem to consider them to be privileges not rights. If I had to forecast what the future holds I would say that more and more rights are going to be redefined as privileges.

 

[rvallee]

Not sure if Twitter is a good medium for this, I can't think of a short answer to that. It's basically THE question.

 

[rvallee]

Yes.



Even further: this should be the model moving forward. With actual paid employment. Obviously not every pwME can do that but for those with a long history of advocacy and involvement, this is expertise that deserves to be paid and can be done in a way that is respectful of the limits and oddities of chronic illness, unlike most jobs.

 

[rvallee]

Can't remember if this has been posted before and search isn't helping.


Persistent symptoms 3 months after a SARS-CoV2 infection: the post-COVID-19 syndrome

https://openres.ersjournals.com/content/erjor/early/2020/09/01/23120541.00542-2020.full.pdf

Results: 112 hospitalized patients and 2001 non-hospitalized patients (confirmed COVID-19, n=345; symptom-based COVID-19, n=882; and suspected COVID-19, n=774) were analysed. The median number of symptoms during the infection reduced significantly over time (14 (11-17) versus 6 (4- 9), p <0.001). Fatigue and dyspnoea were the most prevalent symptoms during the infection and at follow-up (fatigue: 95% versus 87%; dyspnoea: 90% versus 71%).

Conclusion: In previously hospitalized and non-hospitalized patients with confirmed or suspected COVID-19, multiple symptoms are present about three months after symptoms onset. This suggests the presence of a ‘post-COVID-19 syndrome’ and highlights the unmet healthcare needs in a subgroup of patients with ‘mild’ or ‘severe’ COVID-19.

 

[Andy]

 

[Mithriel]

"Question for #pwme - I read a lot about how for some people, ME/CFS worsens over time from initial onset. What’s the mechanism behind this/what does this look like?"

Not sure if Twitter is a good medium for this, I can't think of a short answer to that. It's basically THE question.

There may be unknown biological aspects of the disease that cause deterioration.

Further infections can cause a permanent drop in abilities.

Ageing makes all physical problems worse.

Pushing beyond limits even slightly can lead to permanent worsening.

Sadly this is often iatrogenic due to misplaced BPS theories and societal pressures through those same people hiding the truth about ME.

 

[dave30th]

If it's not already been noted here, @maxwhd on Twitter has highlighted that Jessica Bavington's Vitality 360 company is now touting for post COVID-19 patients:

thanks for pointing this out. I hadn't seen this. interesting that Jessica Bavington does not mention PACE in her bio on the site. The site also includes a "response" to the PACE "controversy" that states that "some" people "allege" this and that, but then babbles on with verbiage and includes no response to the concerns raised in the "controversy." Hm.

 

[rvallee]

Increasingly becoming a problem:



Predictable but still . There's negative tests but also many who tried but could not find a test, were assured it was not necessary because 2 weeks and not at risk and bla bla bla.

"No need to take a test, it won't change your care"

"Well you didn't take a test so it's only presumed COVID"

This is a universal problem but it will obviously lead to the same confusion. The main outcome of this is that barring some new retroactive test, it will definitely not be possible to segregate post-COVID from all other post-infectious illnesses.

 

[chrisb]

Do you remember the days when doctors exercised professional judgment and may have provided better treatment than when relying on unreliable tests?

They even used to take histories. Sometimes they would even examine a patient.

 

[Dolphin]

Increasingly becoming a problem:



Predictable but still . There's negative tests but also many who tried but could not find a test, were assured it was not necessary because 2 weeks and not at risk and bla bla bla.

"No need to take a test, it won't change your care"

"Well you didn't take a test so it's only presumed COVID"

This is a universal problem but it will obviously lead to the same confusion. The main outcome of this is that barring some new retroactive test, it will definitely not be possible to segregate post-COVID from all other post-infectious illnesses.

I found the thread under it interesting:


And further tweets.

So there is a big incentive for some people to be seen as a post-Covid case and not as an ME/CFS case.

 

[Esther12]

I found the thread under it interesting:


And further tweets.

So there is a big incentive for some people to be seen as a post-Covid case and not as an ME/CFS case.

That's interesting.

It does seem likely that some of those with suspected Long Covid will have had their symptoms triggered by other things, but that it's still reasonable to allow them access to the additional covid-related support, at least until the alternative cause has been properly identified.

Ideally people would have access to appropriate support regardless of the cause. In the UK, Covid does seem to have triggered a realisation that our social support systems aren't providing much support, and it would be good if that led to more substantial changes than just providing add ons for covid related problems.

 

[rvallee]

Maybe worth watching: a conversation with Dr Fauci. Questions can be sent. Maybe S4ME can come up with some questions and send them? Maybe do a thread and try to come up with 1-2 questions to send? If only I had cooperating brain cells, but there's time...

 

[Andy]

 

[Dx Revision Watch]

Text of RSM webinar flyer:

There is growing concern that a significant number of COVID-19 patients continue to experience persistent physical and mental symptoms weeks and months after first contracting the virus.

Chaired by RSM President Professor Roger Kirby, this webinar will tackle the topic of ‘Long COVID’, hearing insights from Dr Alastair Miller*, Deputy Medical Director at the JRCPTB, Dr Nisreen Alwan, Associate Professor in Public Health at the University of Southampton and Long COVID sufferer, and Dr Carolyn Chew-Graham, GP Principal in Central Manchester and Professor of General Practice Research at Keele University.

The panel will look at the symptoms and diagnosis of Long COVID, discuss current research and evidence, hear experiences of living with Long COVID, and ask what needs to be done to manage this significant healthcare concern.

The webinar will include plenty of opportunities for questions. All views expressed in this webinar are of the speakers themselves and not of The RSM. Please note this webinar will be recorded and stored by The RSM and may be used in the future on various internet channels.

If you have been enjoying the COVID-19 webinar series, please help support us and our charitable mission to advance healthcare through education and innovation here: https://cafdonate.cafonline.org/13047

--------------------------------------

*Ed: Alistair Miller is a former Consultant Physician in the Tropical & Infectious Disease Unit at Royal Liverpool University Hospital and former lead for the Liverpool CFS/ME service. He was a founding member of the British Association for CFS/ME (BACME) and served as Principal Medical Adviser from 2010-2015 for AfME.