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

A combination of Niacin, Selenium and vitamins C and D were very much the fashion for treatment for ME/CFS in Australia in the 1990s. I remember walking out of the appointment in which I'd finally been diagnosed with a post-viral illness with a big container of flush-free niacin and a jar of selenium. I was to go back for vitamin C and B12 IVs on a fortnightly basis.

None of it made any difference. I suspect most long-haulers will have the same experience.

The more things change, the more they stay the same.

 

Long COVID is neither well-defined nor well understood, in part because the research base is still in its infancy.

That remark in the article struck me. Perhaps that is the problem with ME research. Still in its infancy.

 

Nice of the Guardian to highlight this:

 

Weird. All the "leading researchers" in this "condition" insist that their patients absolutely do not want their old life back because it's what made them "ill" in the first place. They also say that the symptoms are not actually important, yet those people only speak of the symptoms and nothing else. Odd. They couldn't possibly be wrong about this and other things, now could they?

 

COVID-19 and POTS: Is There a Link?

https://www.hopkinsmedicine.org/hea.../coronavirus/covid19-and-pots-is-there-a-link

Articles like this are really unhelpful. They paint a picture of POTS and dysautonomia as something that medicine handles well, or at all for that matter. Yet this is one of the most common problem with Long Covid and as we can see, again, medicine absolutely fails at dealing with it. "Go see a doctor" is really unhelpful to people who did just that, sometimes many times, only to be treated with complete disrespect.

I don't know if it's because dysautonomia specialists are not aware of just how broken things are, which would be ridiculous, or if it's because of some cultural taboo about criticizing systemic failures in medicine, which seems far more likely. Because this gives the impression to people suffering from this that they can seek medical help and actually have something competent and useful, rather than prejudicial discrimination and gaslighting being the norm. Very misleading, it sets people up for failure and massive disappointment.

Pretending things are OK is not helpful when they are maximally broken, it's how they pass well beyond the breaking point to begin with. It's frankly mostly cruel. Delay diagnosis is about, what, 7-10 years for dysautonomia? And that's for the small % who does get diagnosed. And although there are specialists, I have heard so many bad stories of people dealing with the bad ones, who were treated with just as much disrespect as with any random physician who sees this as "women be hysterical".

Right there with a financial adviser telling their clients to invest in the lottery. Reality matters. Medicine sucks at this. Until this is acknowledged nothing will be fixed.

 

https://twitter.com/user/status/1344402819114262531

 

What is different though is that it is happening to health care professionals. Physicians, researchers, nurses and first responders. It has also happened to newscasters (Cuomo) and journalists. They have already demanded research for Long Covid. These people will continue speaking up. They are telling their colleagues. Scientists are now rushing to research all aspects of COVID. And because the pandemic is not over, there will be more joining ranks.

 

The long-hauler approaches will probably swing all ways, but from a ME-perspective I’m just a tiny bit optimistic, looking back at 2020 and the pandemic and looking ahead. The sad fact is that this tiny bit of optimism, is due to the fact that after all, there is just about nothing happening for ME-patients.

Thanks to everyone that is trying. Its hard to think of the situation without the ones trying to improve things, but resources are just not substantial at all for making the progress necessary. Maybe I’m harmed by 15 years of now-it-is-happening over and and over again and the fact that nothings really happening, the situation almost spinning backwards. But the fact is that objectively, - the positives are close to nothing.

So yes, the facts as listed above, more of the “right people” getting ill post-Covid, the firm start, and the numbers worldwide, maybe these factors will make way for some kind of substantial research that may be good for ME-patients? Hard to see any resources left at all after the pandemic for ME-patients, so maybe this is the other way around? And a way that will be backed up by the medical community and politicians? Or could it be that everyone should be cured by CBT and GET?

In the aftermath I hope for some real solid research that is reproductive and may come in handy for ME-patients.

 

We must not lose hope @Peter . i am 12 years in.

 

Absolutely not! It surprises me from time to time how much power there is in hope, when experiencing setback after setback, just managing day to day basics and survival and all your left with is added insult to injury. It’s a cliche and true, hope never dies. So although almost nothing is happening and no one cares, we’re still here. Now finding hope in a true annus horribilis 2020.

 

I've just been talking to @lunarainbows about this topic, and thought it worth pasting some of our conversation here:

Me: I was surprised because I read that long covid is more prevalent in older people than younger people. HOWEVER there do seem to be different types of long covid, so I wonder if the post viral / ME-like type is more common in younger people, and the type that older people are getting might be more a case of making things worse for older people who already have weak organs.

ETA: like, my grandpa when he was old and unwell, became more unwell after a virus, because his lungs got weaker.

I've seen a graph of what ages people most often develop ME at, and it peaks in the teenage years and in the twenties. It would be very surprising if Post-covid ME showed a different pattern.

Luna: I was actually really surprised when they said long covid was found more in older people. I think you’re right, I think they’re not looking at everyone and the people they are looking at, have the type of long covid which affects their organs. And I read a Twitter thing (maybe from S4ME ages ago) that lots of peope with long COVID had stopped putting their details into that app which monitors symptoms of covid and long covid etc. The kings college app. So I think the data isn’t accurate as well.

 

Oh also, Charles Shepherd has said that the people who've been contacting the ME Association for advice about post covid fatigue are mostly aged 20s and 30s.

 

Journal Pre-proof
Integrative Medicine and the Long Hauler Syndrome—We Meet
Again
Randy Horwitz MD, PhD, FACP , Victoria Maizes MD

https://www.amjmed.com/article/S0002-9343(20)31171-2/pdf

 

Medscape interview
Reducing Risk Now, While Preparing for the Next Pandemic
Eric J. Topol, MD; Abraham Verghese, MD; Angela L. Rasmussen, MA, MPhil, PhD
This transcript has been edited for clarity.

https://www.medscape.com/viewarticle/942822

 

Just because 'poor quality' sleep is associated with 'issues', as anyone who's not sleeping problems will feel it, does not mean that ritualising sleep will help.

I am at a loss to determine what they expect people who don't sleep, who the imposition of yet another thing to try and get right, to do, when say after a few weeks they have had virtually no sleep, due to it being ritualised, and impossible.

...and then they add GET.

I 'suspect' that these 'experts' may possibly be not very good at listening or coming up with new approaches.

Decades of people trying this approach, with people not being 'helped' by it...and what do they come up with.

 

Thanks for posting.

If I understand correctly, the quote is from Angela L. Rasmussen, not Eric Topol?

 

Kings college app has been taken to task by long haulers as it does not include a lot of symptoms.
You have to ask the right questions ..

 

The vultures are circling - and babbling as they fly.

 

Presumably they print paid advertisements, and don't mind if these are presented as 'research'.