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

[adambeyoncelowe]

Actually, after seeing the clip here: , I think that people might be misinterpreting what Strain is saying.

The proper relevant quote is: *Insert battery analogy about long covid* "Now that is very different from many other symptoms of fatigue, where we do persuade patients to go to a structured exercise program, pulmonary rehab or cardiac rehab, we tend to say every day, we need to do just that little bit more in order to get better. With long covid, it's definitely a case of sticking within your energy envelope on a daily basis."

He does mention CFS earlier in the conversation, but that's pretty briefly, and given that he specifies pulmonary or cardiac rehab, I don't think you can assume he's talking about CFS in the above quote.

I can see it both ways. My first reading was as yours. But then I rewatched to see how clearly he distinguishes long COVID from 'CFS' at the beginning.

He does seem to suggest the two are different, then goes on to describe how long COVID is different generally, using the terminology and language of ME/CFS ('battery', 'energy envelope').

It might be assumed, though shouldn't be taken as read, that these general differences are also, by extension, differences to CFS (especially since he mentioned CFS by name).

But it does seem odd he used our exact language (unless he's picked this up second-hand from long COVID patients). That would at least suggest he's done some research into our illness, though it's also possible he believes things said by pwLC that he doesn't believe when said by us.

At a push, it's possible he's not a great public speaker and duffed it up. He might even be assuming CFS is distinct from ME, and so is using CFS to mean idiopathic chronic fatigue (presumably he would have learned of this supposed distinction from patients or clinicians).

There may be scope for asking the BBC for a clarification or correction, at any rate. They would likely say it's his opinion, though, and not do anything about it.

 

[cassava7]

The NIHR about the four funded projects:

NIHR: £18.5 million awarded to new research projects to understand and treat long COVID

Therapies for long COVID in non-hospitalised individuals: from symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study)
Dr Shamil Haroon and Professor Melanie Calvert, University of Birmingham - £2.3 million

A subgroup of around 300 patients will receive blood and other biological tests to understand the immunology of long COVID and will wear a device that will measure their heart rate, oxygen saturation, step count and sleep quality.

The researchers will review evidence for long COVID treatments, including drugs or supportive interventions (e.g. for mental health or tiredness). Working with patients, doctors and other experts, the researchers will recommend treatments that should be tested in long COVID patients and co-produce a targeted intervention for long COVID, tailored to individual patient need.

Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services
Professor Nishi Chaturvedi, University College London - £9.6 million

The researchers will use data from more than 60,000 people drawn from a combination of national anonymised primary care electronic health records and longitudinal studies of people of all ages across the country. From these studies, people reporting long COVID and comparator groups, will be asked to wear a wrist band measuring exercise ability, breathing, and heart rate. Participants will also complete online questionnaires on mental health and cognitive function. They will also be invited to a clinic for non-invasive imaging to look at potential damage to vital organs, such as the brain, lungs and heart.

https://www.nihr.ac.uk/news/185-mil...ects-to-understand-and-treat-long-covid/26895

Blood tests to understand the immunology of Long Covid and imaging, on a large cohort.
Measuring objective outcomes such as HR, oxygen saturation, actimetry.
Interventions for mental health and fatigue seen as supportive rather than curative.
Working with patients.
£18.5M funding for a condition that is less than a year old, which is probably more than has ever been publicly spent in the UK for ME and CFS (PACE trial and DecodeME included).

I'm glad that Long Covid is getting the recognition and investigation it needs, but watching it unfold piece by piece feels like being thrown under the bus everytime good news come out for LC. People with ME have been asking for the same attention for decades.

Meanwhile doctors are widening the gap between Long Covid and ME on TV, in the press and in medical journals, while citing exactly what applies to ME because they are clueless about it.

 

[Kalliope]

Here David Strain clarifies this as a misunderstanding and offers an apology:

 

[Snow Leopard]

£18.5M funding for a condition that is less than a year old, which is probably more than has ever been publicly spent in the UK for ME and CFS (PACE trial and DecodeME included).

I can't help but feel upset too, after being dismissed and ignored for so long.

But it's almost as if they're simply feeling guilty that they didn't bother taking the initial actions that other countries did (e.g. Australia, NZ, Taiwan, Thailand) and continued to insist that young people will be fine as there is minimal risk of death in young people.

 

[Braganca]

Another nice response from him..

 

[Jonathan Edwards]

"Now that is very different from many other symptoms of fatigue, where we do persuade patients to go to a structured exercise program, pulmonary rehab or cardiac rehab, we tend to say every day, we need to do just that little bit more in order to get better. With long covid, it's definitely a case of sticking within your energy envelope on a daily basis."

It looks as if Strain genuinely wanted to distinguish Long Covid from 'pulmonary or cardiac rehab' rather than ME/CFS. But I think the problem goes much deeper. The whole idea that you need a structured exercise programme 'in order to get better' looks to me phoney busy-bodying of the sort I met in rehab units in the 1980s.

We know that exercise is good for cardiorespiratory health but that has nothing to do with 'getting better' after some sort of episode of ill health. I have never been aware of any evidence for exercise contributing to a healing or recovery process. As far as I am aware it is simply a way of getting back to normal when you are well enough to do so.

It looks to me from his reference to 'multidisciplinary' that he is someone used to the assumption that lots of therapies are good by definition. He may be coming to see that it is more complicated but I think a much more substantial rethink is needed. People need to stop implying that somehow exercise makes you better - in any circumstances.

 

[Sly Saint]

Another nice response from him..

well he could start by getting the BBC to publicly correct the misinformation or allow him to do so.

(there was also a substantial piece on LC on C4 News; not impressed)

 

[Sid]

There is a cult of exercise in our society. People have been led to believe it has magical healing properties. One of the reasons ME/CFS is heavily stigmatised is because we tell doctors and ppl in general that exercise makes us worse.

 

[lycaena]

very good TV report about ME/CFS in a reputable political magazine on German TV.

Complete exhaustion, constant pain: around 300,000 people in Germany suffer from chronic fatigue syndrome. The disease is often not recognised even by doctors, those affected are treated incorrectly, usually live in isolation and are stigmatised. Now experts see indications that the disease could also be a long-term consequence in COVID-19 patients and warn of a dramatic gap in care. translated with deepl

https://www1.wdr.de/daserste/monitor/sendungen/chronisches-fatigue-syndrom-100.html

 

[FMMM1]

I can't help but feel upset too, after being dismissed and ignored for so long.

But it's almost as if they're simply feeling guilty that they didn't bother taking the initial actions that other countries did (e.g. Australia, NZ, Taiwan, Thailand) and continued to insist that young people will be fine as there is minimal risk of death in young people.

I think you've hit the nail on the head i.e. "they're simply feeling guilty".

I have a feeling ME/CFS may benefit from good quality research into Long covid - OK that's probably wildly optimistic!

 

[Sphyrna]

There is a cult of exercise in our society. People have been led to believe it has magical healing properties. One of the reasons ME/CFS is heavily stigmatised is because we tell doctors and ppl in general that exercise makes us worse.

Stress is seen as the scapegoat for just about every ailment, while exercise is seen as the panacea. It's almost as if society has a pathologic need to delegate responsibility for health to the level of the individual. Someone should write a spiritual sequel to "Denial of Death" called "Denial of Disability" or something.

Btw, I'm shocked by how tasteful treament of ME/CFS in the German media is, it would almost belie how abysmal our medical system is at dealing with it, if precisely that were not thematized. I should almost feel glad for COVID spreading through the population like a wildfire, because I doubt any of the positive developments in recent months would've happened without it. I wish they would've advised sufferers of Long Covid against seeking out any of the newly instituted specialty clinics, because they all follow the CBT/GET paradigm, but I suppose that would've been a little too spicy of a take for a state television channel. At least they don't call it "chronic tiredness syndrome" anymore, as if CFS already didn't do a poor enough job of depicting the level of impairment involved.

 

[Sid]

Stress is seen as the scapegoat for just every ailment, while exercise is seen as the panacea. It's almost as if society has a pathologic need to delegate responsibility for health to the level of the individual. Someone should write a spiritual sequel to "Denial of Death" called "Denial of Disability" or something.

Spot on. I think the ethos of western can-do individualism plays a role here. Anything bad that comes your way is probably your fault because you didn't take care of your health. You can achieve anything as long as you pull yourself up by the bootstraps. You can be anything you want! (Anything except disabled.) Any suggestion that heritability and stochastic factors (over which you have no control) play a role in disease are dismissed with idiotic anecdotes about people who have seemingly overcome extreme challenges through willpower. If Helen Keller could achieve all that, why can't you?

I've even encountered these harmful attitudes among people who claim to reject the protestant work ethic and embrace 'spirituality' and all kinds of postmodern views. A former friend who believed in reincarnation was at a loss to explain my collapse into ME/CFS disability because she knew me prior (I worked a lot, exercised, ate a clean diet, didn't drink/smoke/take drugs etc.) so she stated that people who get punishment in this life must have been "a real asshole in a previous life". As it happens, this person died in middle age a mere year or two after making those comments despite following a strict diet and taking a ton of supplements.

 

[rvallee]

Almost a third of people with 'mild' Covid-19 still battle symptoms months later, study finds

https://www.cnn.com/2021/02/19/health/post-covid-syndrome-long-haulers-gupta-wellness/index.html

Posted mainly because of the reach this can have on CNN. Frankly I find the feigned optimism demoralizing, it's misplaced. Getting about a year in and nobody has learned anything yet other than the fact that acute severity does not predict chronicity.

This is especially depressing:

But there is one constant. "The only treatment I've seen that's consistent is a lot of what we would call supportive care. So that really involves better living and higher quality living, for lack of a better term. But that means you really need sleep. Sleep is going to matter a lot," Sandrock said, noting that stress reduction, meditation and yoga are also part of the mix.

No, attention is not treatment and neither is reassurance. That's just the passage of time, like healing crystals under a pillow, recovery, if it happens, is natural and we still have no idea why or how. It's fundamental in science to be careful about whether something was merely along for the ride or actually had an impact.

And not everyone can just put their life on hold for months while they recover, especially with complete uncertainty over how long it will take. I think a part of the problem here is that well-paid doctors with kickass health insurance do not understand that this is simply not realistic for the vast majority of people. This reeks of self-centered privilege.

And zero mention that this is an existing problem. Hey, it's not as if we are far larger in number or anything like that.

 

[Dolphin]

In case of interest, Dr Anthony Fauci answered a question about long Covid in this recent talk. Transcript is from YouTube. No mention of ME/CFS.

Mansfield Center
18 subscribers


SUBSCRIBE
The Mansfield Center is honored to host Dr. Anthony Fauci for the 2021 Mansfield Lecture. In a conversation and public Q&A, Dr. Fauci will address such questions as: Where are we with Covid-19? How transformational is a vaccine and what challenges are there for distributing vaccines in the U.S. and around the world? When will we "get back to normal," and what will "normal" be like in the coming months and years? As we look to the future, what are the main lessons we should learn from this pandemic?

i'd like to bring in a couple

39:10

missoulians a lisa beard an emergency

39:12

room nurse

39:13

and her 13 year old son hudson who

39:16

contracted the virus a few months ago

39:18

they join us today from community

39:20

children's at community

39:21

medical center lisa and hudson

39:26

thank you first of all dr fauci

39:29

i want to thank you for devoting your

39:31

life to work to help alleviate the

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suffering caused by so

39:34

many horrific viruses and diseases

39:37

around the world

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i believe that you were called for such

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a time as this

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we want to share our story so that

39:43

people realize that coveting children

39:44

can be extremely severe

39:46

with complicated long-term side effects

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children

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are not immune to covid and we

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are seeing more cases of covet in

39:55

children in all demographics

39:57

my son hudson was an energetic healthy

40:00

honor roll

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soccer player seventh grader and got hit

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with kovid in mid-november

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while my husband and other young son

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recovered

40:08

hudson continued to decline now three

40:12

months later hudson is living in

40:14

constant pain

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he has dizziness migraine headaches

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nerve dysfunction affecting his heart

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rate and often

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affects his breathing at night his eyes

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are so affected that he can't

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read or write he also has enlarged heart

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arteries

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a malfunctioning intestine liver

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toxicity

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swollen lymph nodes throughout his

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abdomen and continued nausea and

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vomiting

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vomiting and weakness of his left side

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that looks similar to a stroke

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we have seen many specialists and we

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have a team here with a good primary

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and prayers from around the world for

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him and we've

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we've continued to see specialists

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outside of montana

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at colorado children's hospital as to

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why hudson's body

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is being affected like a tornado i would

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like

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for my son hudson to ask you a question

41:07

dr fauci

41:08

hi dr fauci hi hudson

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every day when i wake up i have constant

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migraines severe headaches and

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um i'm super dizzy my stomach hurts

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um i vomit my heart races

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and i can't read or write no no other

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doctors can help me

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can you help me you know hudson i don't

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know if i can help you right now but i

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can tell you

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that your mother is absolutely correct

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there is a misinterpretation about this

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that children are completely immune to

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any serious

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effects some children get infected in a

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couple of weeks later

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they get a very severe syndrome called

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multi-system inflammatory syndrome of

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children

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that is very very difficult very

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devastating

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could lead to very severe consequences

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in adults we see something

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that we see less often in children but

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you

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are a manifestation of that of people

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who get a classic

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covid 19 illness but then instead of

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recovering

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they get multi-system chronic

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signs and symptoms that can be mild

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or it can be debilitating we don't know

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enough about

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it hudson for me to honestly tell you

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what's going to happen over the next

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couple of months

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to a year but what we hope that there is

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spontaneous

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recovery from this so that whatever

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aberrant

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mechanisms are going on in your body

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clearly

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the virus triggered something in your

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system

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so even though you don't have the virus

43:00

in you

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anymore it triggered something that has

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gotten

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out of control and we hope that the

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body's

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own mechanisms will recalibrate

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and over a period of time get you back

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to normal i can't promise you that

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but i'm hoping that for you and for

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other children

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like you that that's the case that this

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will be

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an unfortunate prolongation

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of suffering from this syndrome but that

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might ultimately correct itself we're

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working very hard

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to figure out what this post-acute covet

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syndrome

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is it has a name it's called

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pax p-a-c-s post-acute

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covet syndrome and you're not alone

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hudson there are many many people

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who have the same thing as you do most

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of them

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are adults but like you some of them

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are actually children so let's hope that

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as we get forward in the coming months

44:06

that those things that are bothering you

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so much will self-correct

 

[Snow Leopard]

I have a feeling ME/CFS may benefit from good quality research into Long covid - OK that's probably wildly optimistic!

On what time frame though? I mean it is likely they are going to repeat all the mistakes and irrelevant avenues that have been made with ME/CFS research first.

 

[Amw66]

I can't help but feel upset too, after being dismissed and ignored for so long.

But it's almost as if they're simply feeling guilty that they didn't bother taking the initial actions that other countries did (e.g. Australia, NZ, Taiwan, Thailand) and continued to insist that young people will be fine as there is minimal risk of death in young people.

They are still doing this .

 

[ME/CFS Skeptic]

Almost a third of people with 'mild' Covid-19 still battle symptoms months later, study finds

This is the study from the University of Washington that found that only 13.6% of patients reported fatigue and only 2.3% reported brain fog approximately 6 months after confirmed COVID-19 infection. Sequelae in Adults at 6 Months After COVID-19 Infection | Infectious Diseases | JAMA Network Open | JAMA Network

Those figures are much lower than suggested before. They do not indicate that as much as 10% will go on to develop ME/CFS. An Iranian study also suggested no significant increase of ME/CFS-like symptoms.

Both are small and preliminary findings but I think we should remember that the patient surveys such as those of Body Politics may not be representative.

 

[Hoopoe]

The long covid groups seem to believe that long covid is often associated with mild initial disease and not having antibodies on tests. Yesterday I read that antibody tests have low sensitivity in women. That could lead to an underestimation of long covid as the people with negative tests are not counted.

 

[Amw66]

Given the increasing number of differences we find between the sexes-

Why did we ever think the response would be the same ?

Interesting to see which other tests/ processes would similarly have this flaw , this might highlight that further assessment is needed

 

[FMMM1]

On what time frame though? I mean it is likely they are going to repeat all the mistakes and irrelevant avenues that have been made with ME/CFS research first.

Unfortunately your concerns are entirely justified and eloquently summed up by @Jonathan Edwards "The vultures are circling - and babbling as they fly."*

Jonathan has also highlighted "the problem with understanding the illness is mostly that it is too difficult to know where to start. People have looked at obvious things like muscle physiology and common genes and found nothing".

I'd opt for GWAS and, following Maureen Hanson's advice, a large repeat of her recent proteomics paper. From the "Conclusion" to the paper-
"As is practice, a diagnostic test for ME/CFS would not be used on subjects who are not complaining of fatigue or malaise; these protein differences must be tested against other fatiguing illness that might be confused with ME/CFS—such as depression, cancer, or chronic Lyme disease, to name a few."
[https://www.mdpi.com/2227-7382/9/1/6]

What areas of research would you like to see progressed @Snow Leopard ? [maybe that's an existing thread?]

Also, maybe we should have a thread which looks at the pitfalls (plenty from previous experience) and what advice would we give to research commissioners? As well as the current NIH grants, that might also come in useful in an EU context [Horizon Europe] @Michiel Tack

Thanks Snow Leopard

*https://www.s4me.info/threads/possi...ovid-19-long-covid.14074/page-151#post-314441