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

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rvallee said:
I've seen quite a lot of reports of people who suffer from migraines and thought it was that at first. So there should be some similarity between the two. Light and sound sensitivity are common with migraines so it would make sense.

Would be interesting to test some migraine drugs.
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I suffered from migraines long before I got ME. My ME started moderate and then slid to severe. At first I just thought the increased sensitivity was migraine related.

As the gift that keeps on giving one of the other problems that occurred after I got ME is I became intolerant of the migraine medication prescribed at the time. So annoying as the medication previously worked really well for me with no side effects. :(
 
I'm still reading daily from the COVID19Positive subreddit. Not much new in the sense that aside from the fluctuation and variation between cases, the reports have been largely consistent since I started reading daily about 2 months ago. The Body Politic report really nailed it well, incredible work. The rest of medicine is still so far behind this and it's been out for weeks. The benefits of patient engagement in medicine could not be clearer than this.

One thing I have seen often is people reporting they had felt fine, would have considered themselves as recovered, only to relapse later. But that's usually shortly after. I had not seen much reports of many weeks of "recovery" that relapsed. Just found one saying they had 10 weeks being symptom-free, feeling "great", only to relapse after exerting too much.



It's the first such long-term I have seen so likely rare. Usually it would be a week, maybe two. But ten weeks later is something else, especially given the use of symptom-free. I often see people who consider themselves recovered but still are still functionally limited, would not use "feeling great" as a description of their state of health.

I'm starting to notice frustration by some at the "ME lobby" jumping in on Twitter. That's normal, although silly to label this as a lobby. But this here is why it's so important to be insistent and meet the problem head-on, because until people get the right advice, too many will dig themselves further by thinking they are out of it. Especially as until the problem is seriously addressed, people can't simply rest indefinitely, life simply doesn't work like that. People are already losing their job over this.

Another thing, seeing more and more mentions of stiff neck. Lots and lots. Probably something not very noticed at first but it seems quite common and likely easy to miss. Especially as it's commonly seen in meningitis, it's very problematic if it's actually benign but such complacency could lead to miss actual meningitis cases.
 
rvallee said:
Another thing, seeing more and more mentions of stiff neck. Lots and lots. Probably something not very noticed at first but it seems quite common and likely easy to miss. Especially as it's commonly seen in meningitis, it's very problematic if it's actually benign but such complacency could lead to miss actual meningitis cases.
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Unlike some people with ME, I have never been particularly flexible. And post ME, I became less flexible. Even when I was exercising, I had a stiff neck and even got mirrors put on my bicycle. Not very macho for a young man but I was prioritising exercising and my neck.
 
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Sean said:
I have wondered if we might be pushing our story too hard to COVID patients, especially early on. Easy to be seen as swamping that discussion with 'activist' agenda.

OTOH, they need this info.

It's a question of balance.
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I would tentatively break down tweets into 2 types: those in reply to other people's tweets or which retweet them with comments; and then tweets that are independent of existing tweets. The former are more invasive and can be more irritating on lots of topics; the latter, less so.
 
Dolphin said:

It has lots of replies
Reading on, it's far from clear she has a good understanding of ME.
And what's the evidence that Paul Garner's experience is unique?
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To be fair, if I was in her shoes, I'd be proclaiming that what ailed me was nothing like ME too given the way doctors treat people with ME.



I don't either. I've never used the word 'fatigue' to describe my symptoms in the 20 years of being ill after a nasty bout of EBV. I feel sick, not tired.


Edit: when making this comment, I thought that this person was a medical doctor so I probably was far snarkier than I would have been otherwise. She apparently is an archaeologist.
 
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At least a lot of doctors seem to be having to change their views on ME, and recognising the multiplicity of symptoms.


There are also enough doctors in the LongCovid group willing to learn from ME without assuming that they are the same.
 
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Aftonbladet, Sweden: Forskaren om risken efter corona: ”Varningssignal”
https://www.aftonbladet.se/nyheter/a/K3daXX/forskaren-om-risken-efter-corona-varningssignal

Google translate, English: The researcher on the risk after corona: "Warning signal"

ME researcher Jonas Bergquist is interviewed about their new research project, and a ME patient is interviewed too. Well worth a read!
By studying covid patients in parallel - who have been in intensive care and who may have long-term suites of the infection - Jonas Bergquist also hopes for breakthroughs in ME research.

- ME patients are often confused with patients with burnout. Those who suffer from depression usually respond quite well to activity changes and antidepressants. But ME patients don't, they just get worse. ME patients cannot make the fatigue go away by resting, and it is extremely difficult for them to recover. On the contrary, physical activity above the individual threshold can lead to relapse and a worsening disease situation, says Jonas Bergquist.

Early days

Although they are at an early stage, they try to find links between ME and covid patients.

- The majority of ME patients debuting in their illness mention an infection of various kinds, that the immune system is triggered, for example, a flu-like infection. It is an ongoing collection [of data] and we hope to reach hundreds of covid patients in order to see a link in the symptom picture or in the disease mechanism, by also including more mildly ill covid patients but with permanent complications, he says.

So is there a risk that covid patients may develop ME?

- Yes, in the long run. If the complications in the form of post-viral fatigue become prolonged for more than six months after a covid-19 infection, and other treatable causes have been ruled out, you as a patient may be diagnosed with ME, says Jonas Bergquist.

He continues.

- Covid can be a way of introduction to get a neuroinflammatory trigger, where the immune system has been given an error signal that causes it to start attacking the body's own cells. This is a phenomenon we need to understand better.
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rvallee said:
Another thing, seeing more and more mentions of stiff neck. Lots and lots. Probably something not very noticed at first but it seems quite common and likely easy to miss. Especially as it's commonly seen in meningitis, it's very problematic if it's actually benign but such complacency could lead to miss actual meningitis cases.
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I get this when in severe PEM. I was worried when it first started, so I mentioned it to my GP; he said that in meningitis, there are usually other indicative symptoms. It's apparently not uncommon for people to have a stiff neck at the onset of viruses such as colds or 'flu, so I wonder if it's another aspect of the immune flare in PEM?
 
Kitty said:
I get this when in severe PEM. I was worried when it first started, so I mentioned it to my GP; he said that in meningitis, there are usually other indicative symptoms. It's apparently not uncommon for people to have a stiff neck at the onset of viruses such as colds or 'flu, so I wonder if it's another aspect of the immune flare in PEM?
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Same here, I often get a stiff neck when I'm in PEM. However, it is a different kind of stiff than what I experienced after having a lumbar puncture. I wonder if perhaps meningitis stiffness is more like the LP stiffness?
 
Dolphin said:

It has lots of replies
Reading on, it's far from clear she has a good understanding of ME.
And what's the evidence that Paul Garner's experience is unique?
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I don't tweet & don't have the clarity to be clear and concise (as you already know :oops:) but if I did I would love to ask - is

As @Art Vandelay says many of us don't recognize fatigue as one of our primary symptoms - certainly not fatigue as might have been experienced as part of our lives pre ME.

Given that she doesn't have fatigue I would like to know what symptoms she has & why they stop her getting back to normal?

This is something I have been asked before when I objected to the use of the word fatigue.

Edited to add -
I hope that covid19 & it's aftermath is taken seriously & believe we could all benefit from research into post viral effects - especially when one of the current reasons why some get it is presumed to be being "prone to distress".

I would hope that our community would be seen as standing up for and protecting post covid sufferers from treatment that hasn't any solid underlying research.

However, I can see why some post covid sufferers would make the comments made by Rachel Pope, especially if they have their own preconceptions about ME and the "type" of person who becomes an ME patient. Who wants that stigma?
 
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Spiegel International: Many Stay Sick After Recovering From Coronavirus

Carmen Scheibenbogen, the head of the outpatient clinic for adult immunodeficiencies at Berlin's Charité University Hospital, is one of the few German experts on chronic fatigue syndrome. Many people with COVID-19 are currently turning to the physician for answers about their odd symptoms.

But even she has to disappoint them for the time being. A reliable diagnosis can only be made six months after infection. "By then, there's a good chance that everything will calm down on its own," Scheibenbogen says. Only symptoms that last longer than six months are considered chronic. And even then, there are few options for treatment.

Scheibenbogen advises those affected to take good care of their bodies. "Overexerting oneself or doing sports that exacerbate symptoms should definitely be avoided. This can make things worse," she says.
 
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Dyspnoea is shortness of breath or “hunger for air”, and is most often seen in cardiac or respiratory disorders. And it is also commonly reported by people with ME/CFS – in fact, 80% of the 2073 consecutive patients in a Belgian study of 2001 reported dyspnoea after exertion, and because of this the symptom was later included in the Canadian Definition criteria for ME/CFS.
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https://www.meresearch.org.uk/shortness-of-breath/
 
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