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

This report suggests that many LC clinics have opened up all over the US. The US health care system is a mess but it does react much quicker. Not entirely sure that the quality is any better, the only quote from a physician involved in this mentioned deconditioning, months later they are still not aware of PEM, have not even asked the most basic questions that common sense dictates to confirm that the hypothesis makes no sense whatsoever.

Within the first few weeks on the Covid19Positive sub-reddit, the patient community was openly talking about PEM, exertion, about being very careful with flares and relapses, to avoid exercise. Mostly thanks to ME material. And many months later the experts still have not even asked the most basic questions that would have avoided them wasting months on a fool's errand. Oy... At this point we need more than patient-led research, how about nothing but patients involved, it may go slower but at least it won't waste months on easily debunked assumptions.

https://www.youtube.com/watch?v=-BWlxdPr_9k

 

Ugh, why do they spend the first part of this news segment heavily suggesting that long COVID people are those who were seriously ill and hospitalized on vents when the vast majority of long haulers are not part of that cohort.

Those hospitalized and on vents have their own terrible constellation of long term symptoms which are more distinct from the majority of long COVID sufferers who were milder, didn’t go to hospital, and many didn’t even feel respiratory symptoms as their primary symptoms.

 

Good work by #MEaction:

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Dear

We have been pounding the pavement working to inform journalists about the long Covid and myalgic encephalomyelitis (ME) connection. Our press team is emailing as many as 5-10 journalists and clinicians each day to educate the press and medical communities about the risk of Covid-19 patients developing ME.

We were pleased to see the fruit of our work this week when The Guardianpublished an article about the overlap between ME and long Covid. The article delves into our concerns about long Covid clinics in the UK prescribing graded exercise, which we know can be harmful to long haulers with ME. #MEAction UK advocates were quoted, and our stop.rest.pace campaign was cited. The Guardian article is a direct result of our ongoing press efforts.

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Clinicians Respond Wonderfully to our Outreach

We are also emailing the clinicians being quoted in long Covid articles daily. We are educating them about the research, providing them with resources on ME, and cautioning them against prescribing graded exercise to the long haulers showing signs of ME. Their response to our outreach has been so heartening!
“Thank you for your kind words and insight! I am particularly intrigued with the advice against graded exercise with ME/CFS. We are building this as we go, and welcome all information and expertise.”

- MD and Director at Major Long Covid Clinic
“Thanks Adriane, this is really terrific and important information. I've certainly come across patients who developed suspected ME/CFS post viral infection (not SARS-CoV-2), and agree that this is another relevant consideration for long-haulers. Nice work.”

- Neuropsychologist, UCLA
"Thank you for this thoughtful response. I have actually done further reading and research since this interview and have found the same information that you have provided and will be including that and discussing it with our doctors. I really appreciate your input."

- MD, New Jersey
How to Report on ME

Meanwhile, we have published a guide for journalists on how to report on ME to ensure their reporting is accurate and avoids the mistakes that the media has made in the past, which have contributed to confusion and stigmatizing of the ME community. Read our How to Report on ME: Guide for Journalists.

As the pandemic sweeps the world, the press are reporting endlessly on the phenomenon of long Covid, and clinicians across the country are dedicating themselves to understanding this group. Now, is a unique opportunity to engage and educate journalists about ME.

Please make a contribution to #MEAction today, and help us continue to do this important press and medical outreach.

Donate to Our Giving Season Campaign!
We can’t do any of this work without your help, and are so grateful for your support!

In solidarity,

Adriane Tillman
#MEAction Editor

 

Do we know what they are telling all these clinicians they are contacting?

 

From http://www.meaction.net/wp-content/uploads/2020/10/Journalists_-How-to-Report-on-ME_CFS.pdf

Statements that, while not necessarily disagreeing with them, I think either make too much of the evidence that we have at the moment or aren't as accurate I personally would like to see.

 

"post-exertional malaise (a worsening of symptoms after physical or cognitive exertion)"

I read this quite often in studies and reports. I would like this to be changed to 'worsening of symptoms that develop into a worsened state of permanent life long disability".

For some of us, PEM symptoms resolve themselves after 3-4 days, but that doesn't mean that we return to baseline. It can take several years to realize that we have worsened and become more disabled.

 

Actually I saw a tweet yesterday by... either an OT or PT... asking whether they noticed that the mild cases are faring worse long term than many of the more severe cases that were hospitalized. Small anecdotal evidence but responses were basically affirmative.

Likely due to proper advice and follow-up, the difference with most mild cases being told to ignore symptoms, just "anxiety", and exercise your way out of it, return to work immediately, etc. LC cases that were initially mild are also less likely to get the kind of help at home that allows them to rest, after all it was just mild illness, how can you still be sick? Which could be the single biggest factor in causing a mass of long covid. Or not, nobody knows, but it sure would have been smart to... do things... anything really, so that we knew more than basically nothing.

What I've seen so far is people making assumptions and never being even interested in testing them. The assumptions are held as true no matter what. Incredible level of dysfunction.

 

Swine flu: Woman, 26, still 'suffering' a decade after catching virus

https://www.bbc.com/news/av/uk-england-cambridgeshire-54966521

Video segment, the synopsis:

Cut that bullshit, DHS and NHS. Those are blatant lies, you have refused all efforts at doing that and now look at what you've caused. She literally says so in the segment, that she gets no help whatsoever, it's maddening how these people can lie so blatantly about human lives. Stop believing in astrology-level horseshit in lieu of medical science, dammit.

 

https://twitter.com/user/status/1329837786757787650

 

https://twitter.com/user/status/1330193928059023362

 

And abdominal pain is also more common in pediatric ME/CFS

 

https://twitter.com/user/status/1330098888750010370

 

Somebody sent me this:

Initial reply:

Any suggestions?

Edited to add: I just also sent this
Perhaps this image and this link might do the job?

https://www.meaction.net/stoprestpace
Edited to add: she is happy with MEaction one

 

https://twitter.com/user/status/1330229356522840068

 

Brian Hughes's recent blog might be relevant since it covers what is in the NICE draft and the reasons for rejecting GET.

 

Especially the discussion over the evidence itself. The sheer number of CBT vs "usual care" trials is absurd. This isn't a replication crisis it's a full-on crisis of validity. If anything there are far too many attempts at replicating the same things over and over again, then simply pointing at the quantity of poor evidence as equivalent to actual good evidence.

I'd be curious about the assessment, especially why it differs from past assessments that "found" the opposite. Mostly very low and the rest low quality is about right. And yet organizations like Cochrane consistently rate the same evidence base as high quality. And of course NICE found roughly the same evidence to be high quality 13 years ago. It's not as if recent attempts at replicating the exact same things have added anything significant since, the quality certainly hasn't improved.

 

Thanks for replying.
It's a very good blog, which I'm highlighting, but think it might be a bit technical for some in a lay audience.

 

To date there hasn't been a lot in the media about long-Covid here but NZ hasn't escaped the scourge either.

The profiled person has been diagnosed with post-viral fatigue, no mention of ME. Doesn't use the term but clearly experiences PEM. Seems to have got the 'energy envelope' message. Is very slowly improving.

As of today NZ has had 1672 confirmed cases of Covid-19. The article says 97 are in a FB group for long haulers so that's about 5.8%. Not every long-hauler will be in that group so the often quoted 10% estimate of long-term illness following viral infection looks to be in the ballpark.

https://www.stuff.co.nz/national/he...ght-months-of-illness-for-long-covid-sufferer

Note that the article is only half as long as it looks due to its bilingual format with a paragraph by paragraph translation (English - te reo Maori).

 

Am listening to dr. Griffin's clinical update on the latest episode of This Week in Virology. At 32.35 and for the next few minutes he talks about hyper inflammatory phase/multi system inflammatory phase seen in in-patients and out-patients. It's also when they see the onset of brain fog.

Many people with Covid have neurological issues. Often at about week 4 or 5. There's growing evidence that this is anti body mediated, which makes sense with the timing. Perhaps due to self targeting auto antibodies that impact brain function. He refers to a comment in Nature; Do cross-reactive antibodies cause neuropathology in COVID-19? - Kreye et al. referencing some evidence that a short course of steroid can impact these symptoms.

He also talks a bit about the "tail phase" and mentions the paper Sixty-Day Outcomes Among Patients Hospitalised with COVID-19 by Chopra et al which concludes that a majority of those who survives has ongoing morbidity, difficulty returning to normal activity, physical and emotional symptoms, financial challenges.

He says one of his patients, a colleague of him with Covid-19 who has been a few months in Intensive Care Unit, had just told him that after having been sick for six months, she was now for the first time able to go the bathroom unassisted. She'd also said that dr. Griffin was the only doctor of all the doctors who took care of her in the hospital that still sees her and checks in with her.

He says we should not forget about the patients when they're discharged from hospital and applauds This Week In Virology for talking about long term Covid. This is not about reconditioning and getting them back to shape. There is a true tail that a lot of individuals suffer from and "we're seeing really solid, high level publications objectively demonstrating this".

https://www.youtube.com/watch?v=cA5r_Z5s-Qs

 

Don't know if this is available yet

https://twitter.com/user/status/1330510488963330049