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

BBC: Covid in Scotland: No clinics for thousands of 'long Covid' patients

Health professionals from the Scottish Intercollegiate Guidelines Network (SIGN), the National Institute for Health and Care Excellence (NICE) and the Royal College of General Practitioners (RCGP) have now defined the term Post-Covid Syndrome.

They described it as "signs and symptoms that develop during or following an infection consistent with Covid-19 which continue for more than 12 weeks and are not explained by an alternative diagnosis".

The condition has been likened to post-viral fatigue or chronic fatigue syndrome (CFS/ME) - but the reality for individuals is very varied.

 

https://twitter.com/user/status/1326467365006176258

 

Researchers Think They May Know Cause of Long-Haul COVID-19
https://www.healthline.com/health-news/researchers-think-they-may-know-cause-of-long-haul-covid-19

This is based on postmortem studies. Any connection to long haulers seems speculative. Dr Jacob Teitelbaum, who has treated ME/CFS patients for a long time disagrees with theory posited and makes supplement suggestions.

 

From Twitter, this has been reccorded and will be available soon

"Fantastic #longcovid webinar at #careforlongcovid It was recorded and will be available soon. I will RT it as soon as I spot it. Great panellists talking about the lived experience of what it means to interest the world in long covid."

https://twitter.com/hashtag/CareforLongCovid?src=hashtag_click

 

https://twitter.com/user/status/1326522419482419202

 

OMG Healthline article author George Citroner and “fact checker” Dana Cassell need to do a reality check and stop pumping up articles for clickbait.

If one looks at the Lancet paper they wrote the article on, this is an autopsy findings paper of a cohort of 41 patients who were hospitalized and died of COVID-19.

It is becoming understood that those hospitalized with COVID and needing ICU care and intubation, that if they survive, can have specific sequelae and issues that are are not necessarily what most long COVID patients are seeing. There is no mention of long COVID in the research article or any connection to long COVID at all.

 

Sigh. I seem to recall that Dr. Teitelbaum cured himself of CFS. He sells books and supplements.

 

Yep I remember he used to have an ME practice I think on East Coast way back when and it was the typical practice of let’s fleece desperate people suffering ME, Fibro, Lyme, etc. by taking no health insurance you pay out of pocket and getting patients to buy all their crafted supplement protocols.

 

https://twitter.com/user/status/1326578072506785793

 

The realization is slowly settling in for long haulers. It mostly depends on individual symptoms, especially those who do not have significant fatigue (but many do have PEM.... sigh) may still reject it, but it's being discussed more openly with time. There's a steady stream of threads on Reddit asking "So is this ME/CFS after all or what?". Discussion is still low because of the... implications... but the advice is very much welcome, especially as it aligns with their experience, unlike medical gaslighting advising to exercise. The understanding of "do not exercise" is viscerally baked in from personal experience.

I think that as long as it's frame accurately, that a subset of Long Covid is ME, it will be received mostly fine. The only question is what % does that represent, but I would be surprised if it's less than half. But by now the average long hauler probably understands PEM far more than the average physician.

But for medical professionals, the main issue remains that most have no idea what ME is and so they can't possibly compare to it. On that we can't do much more than continuing the thankless task of helping accurate medical education being available and spreading the word. This is an issue medicine has to work out by themselves.

A lot will depend on the Long Covid guidelines, whether they include PEM and ME symptoms or leave it all entirely to the ME guidelines. Events so far suggest the latter. I was expecting a bit more curiosity over this draft from long haulers but I think on this front it's them who may feel uncomfortable going onto our domain. Not sure how we can get them involved here but it would be useful, especially with the need to counter the inevitable BPS counter-attacks framing us as deranged lunatics. Long Covid provides the most painfully vivid example of what happens when BPS ideology dominates.

Meanwhile the critics are all jerking each other around over split duality of mind-matter crap. These people are completely lost in philosophical weeds, entirely impertinent. It's so damning that the exact same controversy has existed in full for over a century, unchanged, always saying the same damn things over and over again.

 

At some point we will see Long Haulers have some blood tests with the nanoneedle. That will be interesting.

 

A couple of years ago (iirc) Teitelbaum had moved to Hawaii and was continuing his practice of hawking supplements etc .

 

Very dubious. This is based on a picture that is ignorant of (or indifferent to) neurological and autonomic symptoms. It's important to consider the whole picture, folks. Taking a small subset of it and calling it the whole is a poor way to do things.

To a point it could explain some of the autonomic symptoms, but that would only make sense if the symptoms were only present with desaturated blood, forcing the autonomic system to compensate for low oxygen (and even then). But it can't take into account the neurological symptoms, missing out on a lot here.

Seems more of a possible explanation for severe acute cases, not Long Covid.

 

Supporting Patients Living with Covid-19 Long Term Effects

Wednesday 9th December 2020

Virtual Conference

https://www.healthcareconferencesuk.co.uk/conferences-masterclasses/covid-long-term-effects

Brochure:
https://www.healthcareconferencesuk...erences/2020/dec-2020/long-covid-dec-2020.pdf

“Chaired by Dr Emma Ladds, Academic Clinical Fellow at University of Oxford who has been working alongside Prof Trish Greenhalgh to produce a report for the House of Lords round Long Covid, this virtual conference focuses on delivering services to support people who are living with long term effects of covid-19.”

Speakers Include:

Dr Clare Gerada
Medical Director
The Practitioner Health Programme

Prof Lynne Turner-Stokes
Consultant in Rehabilitation Medicine
and Director of the Regional Hyper-Acute Rehabilitation Unit Northwick Park Hospital

Professor Trudie Chalder
Professor of Cognitive Behavioural Psychotherapy, Kings College

Quite a line up.

I wonder if @dave30th @Jonathan Edwards @Caroline Struthers or anyone else from here might be able to register to take part in this.

It would be interesting to know what they all think of the new draft Guideline for ME/CFS given that Prof Greenhalgh said they were going to try to align them (or words to that effect).

 

An N=1 comment...

I used to smoke like a chimney. Not only that, but I smoked for a very long time (decades). I got help from the NHS to stop smoking using "Nicotine Replacement Therapy" and some meetings with a Stop Smoking Counsellor. It worked - I haven't smoked for over 11 years now.

One of the questions I had for the counsellor was "When will my lungs start to clean themselves out?". She said it could start to happen any day, in a week, a month, a year or possibly never. I was definitely one of the "Never" group. Two years after stopping smoking my lungs still felt like they were full of gunge that I had no hope of coughing up. Then I heard/read about NAC and bought some. It worked like a charm. Unfortunately, I do have to take NAC most days because the self-inflicted lung damage I have is never going to get better, and my lungs can fill with gunge fairly quickly if I run out of NAC.

 

Is that £355?

UK academia is such a joke.

 

You 'might' be able to swing it for only £300pp - under the 'Voluntary sector & charities' rate.

That's only 3 weeks worth of welfare benefits.

 

Really makes me wonder who the target audience is, then.

I wonder even more about who would pay that much money for... whatever this is. What is the actual value here? Talk about hubris to charge this much for something most people wouldn't care about even if free.

 

it is only for those who can claim most of the fee back as part of their employment so basically the tax payer is as always paying for this form of ego stroking . the fees are high to dissuade more intelligent individuals from attending and possibly undermining their bullshitting/brainwashing of others in that field of interest .

 

I've been struggling to keep up with this thread.

Can anyone tell me latest on the most reliable estimate of people with long covid?The last I saw was 1 in 10 suffering symptoms longer than 2 weeks in the Zoe app and 60,000 in the UK. But I think people with LC maybe concerned about the reliability of the Zoe app because of things like people give up recording symptoms.

Thanks