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

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Kitty said:
What irritates me isn't so much the adoption of useful terms, but the lack of acknowledgement of the source.
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Trish said:
I find this use of the term 'appropriation' strange in this context, and don't blame people, struggling and very sick like us, for wanting to tell their stories in the media. It's not their fault pwME have been shamefully neglected, nor that terms and images used in ME/CFS are useful for them too. After all, it seems likely many using the terms like energy envelope and using battery analogies fit the ME/CFS diagnostic criteria too, so using images use in ME/CFS seems sensible. Whatever terms patients with any disease find useful seems legitimate to me.

However I am angry at doctors who persist in dismissing ME/CFS as irrelevant, and who suggest it's just fatigue and therefore different from the long Covid patients with PEM and other ME/CFS symptoms.
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I agree. I’m not against the appropriation at all, I would only like that people with ME be acknowledged when these terms are used. On the other hand, it is likely that some people with Long Covid have heard about them second hand, so, setting aside the stigma of ME/CFS, I understand that the connection isn’t generally being made.

How the consequences of the historical framing of ME as chronic fatigue keep unfolding, this time separating LC from ME because the latter is not perceived as a multi systemic disease, is baffling.
 
This questionnaire actually looks useful and competent, including for ME.

Thread:



And this one also:



This kind of questionnaire was discussed a few times prior. Here as an example: https://www.s4me.info/threads/does-...tch-your-mecfs-level.16467/page-2#post-283092, discussion started about the SF-36 and how to make a better questionnaire.

Actually pertinent and competent questionnaires relevant to the reality of this illness and ask about symptoms >>>>...∞...>>>>>> generic BPS psychometric questionnaires of no relevance to the actual lived reality with zero concern for symptoms.
 
cassava7 said:
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.
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It makes me sick to my stomach (figuratively). Seeing for example that Strain BBC interview where he’s saying the LC to ME distinction can be described by old battery analogy in LC and his blatant ignorance and arrogance (for not bothering to spend the effort to read up on ME/CFS or talk to ME clinicians enough to know anything about it) makes me feel so disappointed in the medical profession. ME has been using the old battery analogy since forever.

I see now that Strain understood the LC ME similarities better after S4ME members and others had a conversation with him on Twitter. But unfortunately so many people who watched that BBC piece will not see that he changed his mind and they will go on believing LC and ME are very distinct and that pwME don’t have the same old/broken battery feeling everyday.
 
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I posted this on the thread "A nanoelectronics blood-based diagnostic marker for ME/CFS ....." as it clarifies a point we've been discussing but it belongs on this thread too.

It's a panel discussion with Ron Davis, Ami Mac & Michael Snyder titled "The Crisis: Post Covid Symptoms with Stanford University" that looks at many aspects of Long Covid & ME/CFS. Focus is ME research.

 
COVID-19: B.C. doctors seek to understand crushing fatigue months after recovery
B.C. doctors treating long-haul COVID-19 patients are trying to figure out why some suffer from crushing fatigue months after recovery.

Some patients experience relapses of their virus symptoms when they exercise, such as shortness of breath, coughing fits, loss of athletic ability and general malaise — all despite their tests showing no signs of illness.
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So far the clinic has treated 77 patients and is averaging 18 to 20 patients a week. Among them are young people who complain of not being able to exercise up to six months after falling ill.
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“It’s tough. Their tests come back normal yet they still feel so fatigued,” he said.

Schwartz said patients with the most long-term symptoms tend to be the ones who were not hospitalized but doctors are not sure why yet.

Symptoms range from pulmonary complications to muscle weakness, fatigue, post exercise malaise, to problems with cognitive function.

“We have seen young people — lawyers, physicians, accountants, people with high cognitive jobs who can’t do the same workload as before. There are people who are finding it difficult to perform basic tasks,” said Schwartz.
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“It comes down to a lot of people feeling completely drained.”

The clinic is also screening COVID-19 patients for mental health deterioration, including Post Traumatic Stress Disorder. The clinic has on hand psychiatrists as well as a team of doctors and rehabilitation experts.
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The latest research is showing a possible connection between COVID-19 and Myalgic encephalomyelitis or chronic fatigue syndrome, said Wong.

“The thought is that when people go through the acute phase of COVID there’s an immune reaction which leads to a lot of inflammation in the body and that’s a normal response. But what happens is that some people’s immune system just doesn’t go back to normal,” Wong said.

Myalgic encephalomyelitis can last for months but doctors don’t know at this point how long the fatigue will last in patients. Wong stressed this is still a hypothesis.
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https://vancouversun.com/health/loc...rstand-crushing-fatigue-months-after-recovery
 
leokitten said:
It makes me sick to my stomach (figuratively). Seeing for example that Strain BBC interview where he’s saying the LC to ME distinction can be described by old battery analogy in LC and his blatant ignorance and arrogance (for not bothering to spend the effort to read up on ME/CFS or talk to ME clinicians enough to know anything about it) makes me feel so disappointed in the medical profession. ME has been using the old battery analogy since forever.

I see now that Strain understood the LC ME similarities better after S4ME members and others had a conversation with him on Twitter. But unfortunately so many people who watched that BBC piece will not see that he changed his mind and they will go on believing LC and ME are very distinct and that pwME don’t have the same old/broken battery feeling everyday.
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As I understood his response to @Robert 1973 rather than having his mind changed by anyone Dr Strain explained he already didn’t think GET appropriate for people with ME but had misheard the question from the interviewer
 
'Don't suffer in silence': Wigan long Covid sufferer urges people to get help
“It’s like hitting a brick wall and I’m always tired and breathless.”

These are the frightening words of long-Covid sufferer Debbie Parkinson, from Standish, who has been battling the debilitating effects ever since she had the virus in October last year.
Debbie, 64, who has asthma and diabetes, suffers with a range of symptoms including tiredness, breathlessness, chronic fatigue and a loss of smell.

Now the Standish with Langtree ward councillor has spoken out in a desperate bid to raise awareness of the long-term health effects of Covid-19.

Debbie said: “After having the virus, I was in hospital with a clot on my lung and I had to inject myself every day for three weeks when I come out.

“To this day, I always feel tired and breathless and I’ve had to change my inhaler to a steroid one which has helped.

“I’ve had a long-Covid referral from the doctor and I’m awaiting a telephone conversation with a chronic fatigue syndrome clinic.

“It just feel like I’m hitting a brick wall and it’s a good job I’m working from home as I’m not sure how I would have coped.”

And Debbie praised her GP surgery, Beech Hill Medical Practice, for their support throughout.
She said: “My GP rings me every fortnight to see how I feel and my nurse also calls to check how I’m doing with my new inhaler. They’ve been fantastic.”

However, Debbie said more needs to be done to raise the profile of long-Covid and provide services to people who need it. In the long-term, she said it would be “another pressure on the NHS” and something which employers need to understand when workers do start to return to the office.

She said: “Long-Covid is something that is beginning to be reported and Jo Platt, the former Leigh MP has got it.

“It’s one of those things you can’t see and it’s invisible, so it’s harder for people to understand.
“Employers will also need to be more aware for when people start returning to the offices.
“A lot of people read Facebook and social media and they’re saying that the number of deaths is going down and the situation is getting better.
“But although the deaths are really sad and awful, long-Covid is going to be a big problem for NHS resources in the future.”

Going forward, Debbie said the government needed to be looking at ‘Covid hubs’ for sufferers.
She said: “I’m not sure where the government are up to with this.
“You get pulmonary rehab for chronic fatigue, but it’s all done in separate clinics and we do need a more combined approach that gets people together and stops from needing a number of different appointments.”

Her drive to raise awareness has seen Debbie write a number of blogs for Public Health England (PHE) North West to educate people about long-Covid.
She added: “PHE have shared a bit of what I’ve said about long-Covid on Twitter and the rest of it is being published soon. I would just urge people to come forward and get help if they’re struggling. Don’t suffer in silence.”
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My bolding
https://www.wigantoday.net/news/peo...vid-sufferer-urges-people-to-get-help-3142115
 
Sweden currently doesn't have any compiled data on how many people are affected by long covid, and won't be able to get it unless data privacy regulations are changed.

A spokesperson for the Swedish association for doctors with long covid says their current estimation is that there are more than 100 000 long covid patients in Sweden.

Google Translate said:
It is unclear how many have long-term covid

The National Board of Health and Welfare has been assigned by the government to investigate the group of patients that has been affected by long-term covid - but an ordinance to protect patients' privacy puts a stop to the National Board of Health and Welfare to investigate how many Swedes it may be, reports Swedish Radio Ekot.

The ordinance means that the authority is not allowed to read the patient register, but only receives data on those who end up in hospital or receive specialist care.

- It impairs our ability to have an overview, not to have access to data from primary care, and now during the pandemic it has become obvious to more people that we actually need that data, says Thomas Lindén, head of department at the National Board of Health and Welfare
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https://tt.omni.se/oklart-hur-manga-som-har-langtidscovid/a/yROode
https://sverigesradio.se/artikel/sv...en-att-utreda-hur-manga-som-har-langtidscovid
 
This is in German, a whole documentary on LC with different severities.

A young hockey player that never had any symptoms whatsoever & then was dianosed with Covid myocarditis in a routine checkup. He was put on hold for 2months from training (and any exertion) before being allowed to go back.

An ICU nurse that ended up in her own ICU herself with severe Covid. She had breathing problems afterwards even though her lung capacity was fine. She was put into rehabilitation where they said many patient's lungs seem ok but have problems with deep breathing. She fully recovered and went back to work.

A radiologist with a rather mild illness developed fatigue, severe cognitive issues ("struggle to do math at a 2nd grade level, only can read big headlines but not full articles") and something that sounds like PEM (getting worse after doing too much). She was in rehab with exercise. Seemed to get better and was sent home. Crashed and was diagnosed with "CFS". Her brain scans were clear.

From minute 34, there's a part about CFS with ME researcher Prof. Scheibenbogen.

I think this shows how severity of symptoms, organ damage and long term outcome dont have to correlate at all.

The producers of the docu had asked our health Minister Jens Span for an interview, he replied that there is no reliable data yet if "post covid syndrome" is a distinct entity at all.

At this point I cant help but to think this is deliberate denial to prepare for BPS framing/turn down future claims. The data about the phenomenon LC has been out for >6mnths now, our media has picked up on it.

Why is there no massive PR campaign?
 
The documentary is suprisingly watchable with automatically translated subtitles, btw, at least the first 5 minutes. So that's an option for anyone who's interested, although I doubt there is much in there that most people on here don't already know.
Really not excited over the fact that I can understand the comment section, though. I find it funny how right-wingers are suddenly deeply concerned about "the children", once their own freedoms are at stake.
 
I just finished watching a Facebook live video about long covid in children, as discussed by four Hungarian doctors, three paediatricians and one infectologist. This is the first in-depth discussion of long covid I've found here. (Sorry, it won't embed it.)



It started well (as opposed to another video I watched about a week ago, where it was supposed to be one of the main topics but they almost said nothing about it), they mentioned that we have to differentiate between long-term sequelae caused by organ dysfunction and long covid syndrome itself, which means persistent symptoms without any clear medical reason. They mentioned respiratory, heart issues and problems with the central nervous system, and named chronic fatigue syndrome (this is the only term in use here) and depression as examples and went on to talk about potential diabetes and metabolic problems.

About long covid they said this is something new, something not in the textbooks, they have to learn it now themselves. They also mentioned that children and young people are affected too, and it is independent of the initial symptom severity.

Then the infectologist started to talk about functional exhaustion, chronic fatigue syndrome, that it is a serious problem and these people need rehabilitation.

They mentioned something that I've also noticed in my group: many children with long covid have severe headaches, this seems to be a very typical symptom (but also muscoskeletal pain, gastrointestinal issues, fatigue, etc). This seems to be much more common in children than multisystem inflammatory syndrome.

Then they went on to talk about how social isolation contributes to the persistence of the symptoms, and psychosocial stressors exacerbate it.

One paediatrician was also a rheumatologist and said, it is normal to perceive stronger pain after psychological or any other stressor, this is how the body adjusts after a stressful event, and the feeling of the pain is real. Then another paediatrician said social pain exacerbates it too and they amplify each other. Just because they didn't find a medical reason for the pain, the feeling itself is real.

As for therapy, telling people they are not really ill is not a solution. They need empathy, they need to be led out of this bad cycle. Psychological guidance may be a good solution, because people (here they were talking about adults too) can't reintegrate due to their raised temperature, high pulse, etc. A combination of psychology, physiotherapy and if necessary due to organ issues, medications will help. There is a chance that the underlying problem is not enough motivation and depression. They also said they also shouldn't miss it if there is some serious medical issue going on on the other hand.

And here they accidentally cut off the live video and will upload the end at a later time.

Well, I'm not that impressed. These were quite young doctors, I was hoping for something else.
 
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