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

Something else dawned on me about those lucky enough to have apparently recovered.

Whose to say that catching this virus isn't setting the scene for problems 10 or 15 years down the line? We just don't know enough about it to confidently say anything.

I hope I'm completely wrong, and I don't want to be alarmist, but if it's true (& we don't know) that EBV, for example, is a trigger for ME I caught & recovered from that at least 13 years before developing ME. It could be that it set the scene for a later virus, pathogen or set of triggers.

It isn't impossible that some of those, probably a small minority, may seem to have made a complete recovery & be fine until they meet another pathogen sometime in the future.

 

Yes, and that’s why I really appreciate this forum. I think there’s something special here that I haven’t found on any other forum or on facebook (if there’s something similar on fb let me know..).

These things - what recovery means, what control groups are and why they’re so important, blinding & double blinding, and when experiences are subjective - what that means. Not that people are making things up, but it’s not as simple as - “they’ve recovered. that is the “right thing” to do. I didn’t do it. Now I have to try it...even though I’ve tried it I’m still ill and it’s my fault.” Or - “someone’s telling me to do this. I should do this”.

These things are talked about in a very careful way, and it’s helped put things into perspective for me as well over the last year. Also the very rigorous and careful discussion on pacing, what it means, deconditioning and the fact it can occur but also why it’s a product of the illness & it’s not my fault. I’ve learned so much. When I first became ill I wasn’t that involved in the ME community, I found it too overwhelming. Then when I had my first relapse, I wrote a few blog posts then took a step back again as I found it so hard that everyone had a different story & a different thing that helped them. And then I would hear of a different thing that made people worse. And then despite the thing that helped them, they sometimes said they got worse afterwards too anyway!

And for each, there would always be a few others that got better from that particular thing too. And things are just reported just as they are, which is probably understandable. With none of the caveats or reasoned or careful way of talking about it that is here, which helps me understand it more. I researched things like crazy, tried so many things, that took a lot of my energy.

I got contacted by someone who had read my blog, telling me they massaged a spot on their head and had a full recovery and that’s all I needed to do (!). I found it really hard to understand.. how could an illness be like this? But I understand it now, more... for a condition that doesn’t have treatment and has so little research, compared to other illnesses, it makes sense...also for a condition that genuinely does seem to wax and wane, often for no reason at all (and it seems to have happened to me), and we don’t even know what if any subgroups there are for ME.

But then now I’m slowly trying to get back into the ME community.. I’m still only half there as I find it overwhelming & I need time out often. But this forum helps me so much & I’m able to evaluate things in a different way now. And sometimes when I don’t and I feel confused..and when I start comparing myself to others.. I just come back here & feel better again.

(And I think I can honestly say if I hadn’t been reading this forum over the past year, especially since the focus and posting about very specific treatment/surgeries since last year, I would have been in a pit of fear and despair and confusion. I don’t think there’s anywhere else that is evaluating things the way this forum does. My science-y, maths-y mind is happy. I am grateful).

 

This video doesn't run in my country, so I'm not sure what it's like:
https://www.wsmv.com/news/doctors-c...cle_b65fbed8-bcc7-11ea-bb58-875424462675.html
https://twitter.com/user/status/1279231595053035521

 

I feel the same Luna.

 

https://www.telegraph.co.uk/global-...-leave-suffering-insomnia-fatigue-months-end/

I felt it downplayed the ME/CFS-type effects a bit.

 

https://meassociation.org.uk/2020/0...al-fatigue-syndrome-with-dr-charles-shepherd/

 

https://www.youtube.com/watch?v=nMbQlzqZZKs

One of the experts on is from the Advanced Wellbeing Research Centre ["Dedicated to improving the health & wellbeing of the population through innovations that help people move."]. I'd be suspicious they might recommend a biopsychosocial approach, but he doesn't say much during the interview.

 

Here's a Swedish news article (behind paywall) suggesting long-term covid-19 symptoms might be anxiety.

DN: "Långvariga covid-19-symtom kan vara ångestsyndrom – men det finns andra orsaker"
https://www.dn.se/nyheter/sverige/l...-kan-vara-angestsyndrom-men-inget-vet-sakert/

Summary of the article by another news website:

 

But the symptoms could also be based on psychological factors, according to Hans-Gustaf Ljunggren, professor of infectious medicine at the Karolinska Institute in Solna. He says there are people whose symptoms overlap with those found in patients with anxiety-related illnesses.

Why make a statement like this at all?
It's totally unsubstantiated and just feeds into the narrative that symptoms without objective measurements of abnormalities are psychogenic in nature, eg. the unexplained is unexplainable is in your head...

But we know that Covid-19 is very real and it's becoming clearer every day now how many different symptoms the virus can cause (or perhaps the immune system in response to the virus) and how different the courses of disease are, both in length and severity. That patients can present with completely different symptoms and that not everyone has respiratory problems, cough or even fever.

That some people have symptoms that overlap with those that occur in anxiety related disorders doesn't say sqat. Many diseases have. It certainly doesn't say covid long hauler's symptoms are caused by anxiety. It could just as well be the other way around, some symptoms resemble the physical sensations that make up anxiety.

This again, why not just say: We don't know (yet) !
Because even if it's proven beyond a shadow of a doubt down the road that a statement is wrong, the more times it has been repeated the more true it is believed to be, especially when uttered by an authority. As we all know just to well...

My mom and I are still having symptoms, so I guess we're long haulers now. Hooray!
Her symptoms and mine differ in many ways, she lost her sense of taste, I didn't. She hasn't had respiratory problems or a cough, I have. We've both had heart palpitations, dizziness, nausea, GI problems and severe cognitive problems though (which could all occur with an anxiety related disorder). While I have experienced a lot of anxiety in my life, my mum has literally had anxiety once in her 77 year old life.

Sorry if I'm rambling, that statement just made me so angry, but my covid-brain is even worse than my ME-brain!

 

CFS often has a cause/trigger that the patient can point to. It would be more accurate to say that CFS is often defined by doctors rejecting the cause that the patient reports because such long term consequences defy their expectations.

 

https://twitter.com/user/status/1278996008630988801

https://twitter.com/user/status/1278698253274492937

 

Sounds like ME for sure

I'm afraid Garner is going to have to get rid of his notions of exceptionalism. His illness has a cause. CFS is defined by not having a cause. What then causes CFS?

It seems astonishing that, as an infectious diseases expert, he knows of nothing, other than Dengue Fever, capable of causing such symptoms. He has a little catching up to do. That may be a "long-haul" too.

On the point that he thinks his illness like CFS, except for it having a known cause it may help to quote the acknowledged experts,

"It must be emphasised that the link between these epidemics (causing ME) and modern CFS is largely historical. The two conditions were very different. Epidemic ME was contagious, acute and accompanied by paralysis and neurological signs (albeit of disputed origin). Sporadic CFS or ME, as seen today, is non -contagious, chronic, fatiguing, and has no neurological signs-we doubt whether any modern observer would consider a diagnosis of CFS in a patient requiring assisted ventilation. Hysteria is also a peripheral issue in most clinical encounters. Most of those affected by outbreaks of ME and related conditions do not fulfil criteria for CFS...

P132 Chronic Fatigue and its Syndromes , Wessely Hotopf and Sharpe

I hope that is clear. Any complaints should be addressed to the authors.

 

It seems that this is what he was saying, that the definition of CFS is flawed because it clearly has a post-viral (or post-infectious, whatever) element and that becomes a problem when there actually is a clearly identified viral trigger.

Someone on Twitter made an excellent point: ME/CFS is not defined by not having a cause, it is defined by medicine rejecting its cause. The exact mechanism of cause-and-effect is still unexplained, because of deliberate sabotage and denial of resources, but it is the common element to most cases, it's completely unscientific to dismiss the obvious and yet here we are.

Just the same as HIV deniers may have various beliefs and opinions, they are defined by one and one thing only: they reject the actual cause of AIDS. It is fundamentally the same context, it is not the patients who don't have a cause, it is weird people deciding to arbitrarily reject it.

 

OK' I can just about accept that. The problem still continues with the Wessely at als definition. By that it is closer to epidemic ME, a purely historical phenomenon, than sporadic CFS, the modern explanation. There is going to have to be a lot of reconceptualisation.

 

I'm not convinced that's what he had in mind when he wrote articles like this:
https://blogs.bmj.com/bmj/2020/05/0...ith-the-constantly-shifting-bizarre-symptoms/

But I'm hoping his views have developed since then?

 

It does seem odd that as an infectious diseases expert he had so little knowledge of ME/CFS/PVF/PVFS.

In denying the possibility of PVFS it is possible he was following the Ramsay interpretation of the post glandular fever PVFS as a constant, not variable, fatigue lasting up to 2 1/2 years. One would expect him to be starting from a much higher level of awareness. Perhaps this explains the problem we have.

 

There seems to be a thing like post-viral fatigue that is not much more than that. Garner said he experienced it a few times and other ID specialists said the same. Just a longer recovery but without the crippling onset of neurological and ANS symptoms. I think this is what they understand by it and why the visceral reaction of "it can't be that, this is way more serious".

It resembles the mildest cases of CFS and is probably that, the mildest end of the spectrum where the virus did not find its way into the nervous system. Whether it's the same thing or not would be pretty useful information but, you know, "business of rehabilitation" and all. Hence the major issue with keeping an entire spectrum that goes from "temporarily mildly limiting" to "slow and unbearable death" as being the same thing.

We could have known better. People chose otherwise. People with no stake in the matter and against the strong objection of those who paid for this failure with their lives. Decades of lies have piled up into a nice massive disaster. Just good old timey medicine, like they used to do back in the days when most people who visited a doctor died. Gotta keep some traditions alive...