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

Long Haulers: The Continuing Casualties of COVID-19

https://www.emsworld.com/article/1225291/long-haulers-continuing-casualties-covid-19

 

No, it's not 'strange' that a virus affects healthy active young people and they become disabled.

 

Signs You've Already Had COVID, Says Dr. Fauci

https://www.eatthis.com/signs-post-covid-fauci/

 

https://twitter.com/user/status/1332676386159521796

 

Many have developed post-infectious POTS, and may not go on to develop ME. I've been reading about post-infectious POTS from patients who became ill from contracting other viruses, some are attaching ME to the mix, but 2 years on they are able to do cardio and yoga on a daily basis. They continue to pace themselves, but aerobic exercise isn't an issue- they don't experience PEM as I would describe it from my experience.

Can you see the danger in attaching ME when we don't know yet? Increasing activities has never worked in my 28 yrs with ME.

 

I lik the confidence of "these are unanswered questions that we will soon answer".

 

https://twitter.com/user/status/1332303403125534722
I vaguely recall he was mentioned before.

 

How are they going to "soon answer" when they aren't willing to invest the $$$ (hundreds of millions) to find out?

 

It will be interesting to see how Somerset CCG respond to the new ME NICE guidelines, since they spend a paltry £60,000 per annum on the current Specialist CFS/ME Service (for a population over half a million). It doesn't even offer a diagnostic service, just a few sessions of CBT or GET for GP diagnosed patients to help them 'adjust' to living with the illness.

 

If anyone's wondering, EMSWorld published an article a few weeks ago but this is a new one. Pretty good and clear-headed, recognizes the threat to public health of adults in the prime of their health being possibly disabled for life. And points out how medical workers are especially at risk, it's not a profession that is very big on the whole "take time to rest" thing.

 

It's going to be a huge effort making it clear the obsessive focus on fatigue is very problematic, that autonomic and neurological symptoms can present themselves without excessive fatigue or even PEM. At least I'm not so much afraid for the autonomic symptoms, POTS seems to be gaining a health respect. The neurological symptoms, though, oh boy. It's going to be critical those with primarily neurological symptoms don't get thrown off the FND cliff.

Hopefully the respect being granted to brain fog, especially with so many physicians themselves affected, may work out OK. It's one thing to have one's body go bad, it's a whole other thing to lose wits and cognitive faculties, a much deeper loss and massively problematic for the main age range of 20-40, a public health crisis with an equal economic burden.

 

Dr. Griffin touched briefly upon Long Covid again in his latest clinical update for This Week in Virology.

At 23.00 minutes in:

This is our tail phase. Recognition and research.
So again, dr. Fauci talked about this in an interview and according to him, something on the order for 20 to 30% of people who had a symptomatic form of the virus, even without necessarily progressing to serious stage, not everyone needs to go to the hospital..
But 20-30% have what some people call a post Covid syndrome, a tail of covid, a long term covid - so that I come up with the right name here. But he also let people know, and I’m going to let people know as well that there are now large research programs underway to understand what’s happening and try to come up with therapies that help these individuals. I got a large trial, a help group that I’m working with. So just to let everyone know we’re paying attention to this growing number of people. We’re trying to sort out exactly what’s going on.

https://www.youtube.com/watch?v=525B_j28HzU

 

Dr. John Campbell is a British retired Nurse Teacher who has made numerous YouTube videos with updates on the pandemic. I believe some of his videos might have been shared on this thread already?

Today's video is about Long Covid where he summarises current official knowledge. Chronic fatigue syndrome is mentioned a couple of times, but not as something directly related to Long Covid.

https://www.youtube.com/watch?v=SJ8u3G73p-I

Nothing new, but he talked among other about a good JAMA article I hadn't seen before (or just as likely, have forgotten).
It's from November 11th and written by an emergency medicine physician now suffering from Long Covid.

JAMA: Reflections of a COVID-19 Long Hauler - Jeffrey N. Siegelman, MD

The Lack of Objective Data Does Not Preclude Illness

As an emergency medicine physician, I am trained to develop a hypothesis and to look for objective evidence in support to quickly identify the cause of a patient’s suffering. In the absence of objective data—laboratory tests, imaging, examination findings—we are often left to reassure patients and discharge them with a recommendation for outpatient follow-up, an outcome that too easily can feel dismissive and unsatisfying for the patient and unfulfilling for the physician. My test results were normal: nasopharyngeal swabs for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), imaging, laboratory results, oxygen saturation were all fine. But I did not feel fine, and still do not. I have had a rotating constellation of symptoms, different each day and worse each evening: fever, headache, dizziness, palpitations, tachycardia, and others. As a result, I have been reminded of the need to listen to the patient first, even in the absence of conclusive testing. The next time I care for someone with vague abdominal pain, or fatigue, or paresthesia, or any of the myriad conditions that are uncomfortable on the inside but look fine on the outside, I will remember that these symptoms are real and impactful for patients. There is a marked difference between tests being within normal limits and a patient being well.

 

Looking forward to details on this. Really hoping this process is more open and collaborative than past efforts. The time of working in small teams in isolation is over, these kinds of programs need collaboration, data sharing and an open process.

Because otherwise it is too much like past promises. It could be true. It could be an empty broom closet for all we know.

If there ever is a time for medicine to put big boy pants and actually commit to patient engagement, not as a peripheral thing but central to the entire effort, this is it. It's uncomfortable and probably feels a bit like having someone over your shoulder the entire time but the old approach has failed, secrecy breeds too many opportunities for agendas and internal politicking.

I hope this is real good news. It sounds like real good news. It's just hard to tell from the closed box alone.

 

I'm just finalising a response to the draft long-Covid guidelines. Anyone have a figure for the estimated percentage of ME/CFS cases that have a viral cause? I see a figure of 72% on MEPedia but that is for viruses and bacterial infections.

Second, was it ever shown that SARS-Cov resulted in ME/CFS, or just that it led to an ME/CFS-like illness in healthcare staff affected by the virus?

TIA

 

"
In fact, viral-like illnesses appear to precede ME/
CFS onset in approximately 50% of patients [15]."

https://www.researchgate.net/public...cephalomyelitischronic_fatigue_syndrome_MECFS

 

It's not helpful for your letter, but I don't think we can know this in a way that's reliable enough to be useful.

It could be 100%, as viral infections can be asymptomatic; it could be that two or more factors are necessary, and viruses rarely precipitate ME alone. The latter appears less likely, but I wonder if we ought to leave open the possibility at the moment?

 

That's true, but I think the qualifiers in the statement ('viral-like illness', 'appears') make it ok.

 

Why are they still sick? The search for answers inside Canada’s first post-COVID clinic

https://globalnews.ca/news/7479200/coronavirus-post-covid-19-long-haulers-research/

OK article and video report but completely naive of context. I can understand, to a point, not seeing the link to ME but given the dozen or so post-XXX syndromes and seriously everyone has heard of mononucleosis? Is it just that people assume mono is "just" fatigue or what? It's so bizarre.

 

Much better video report with an ME patient, generally and about the link to LC and how relevant it is. The interviewee did an incredible job laying down the basic facts in 3 minutes. Amazing. Brief mentions of "tens of thousands" of existing ME cases. Actually on last count over 500K but alright.

https://www.ctvnews.ca/video?clipId...U5Q2LuoF9Io0d7nDqaLhNRXoP6_yNNBlWxy3tzbRNrt0s