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

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Mij said:
"The exact cause of ME is unknown, but, a viral trigger is strongly suspected" They can't call themselves 'experts' on ME either. It's quite well known now that a viral or bacterial triggers ME, at least over 70% pwME have reported this.
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I think 'strongly suspected' is ok. It's very difficult to be certain with anything related to ME, and self-reports from anyone can be less than completely reliable. They didn't say they were an expert in ME so I can see why they'd want to avoid making definitive statements.

Also, the headline (designed to attract clicks) said 'expert studying the condition' rather than 'expert in the condition', so I wouldn't be too critical of that either. Not read the article though, so maybe it's terrible.
 
Snow Leopard said:
This is an interesting point. Especially those early on (Feb/March/April), were struggling to get one PCR test, let alone followups.

In Australia, things have been a little different - patients have been tested multiple times as our governments have focused on making sure people are not infectious before they can exit quarantine. But I haven't heard much from LongCovid patients in Australia. A 2.5% incidence would lead to a not insignificant 700 patients, but that is Australia-wide...
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Is there evidence to support the "2.5% incidence"? It might be useful in lobbying @Michiel Tack
 
Sly Saint said:
given that we are all being told 'long-covid' is a 'new' condition, I'm not sure how anyone can call themselves an 'expert' yet .......unless of course they are at KCL.
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I think I met this lady at the DecodeME meeting. If it is her, as I think it is, she is an expert. Slightly dry in manner but highly intelligent and potentially of importance to PWME. She is into genetics and also fibromyalgia. Very biomedical. I reckon she is an expert studying the condition.
 
When ME was defined it was well understood that it was a symptom set that occurred after many epidemics in different times and places. People who had it recognised it in each other especially in the way it was so dependent on exertion.

A lot of the confusion came in because the emphasis was changed to fatigue as the common symptom but that has many varying causes.

Post epidemic ME may be a particular subset of a wider disease but that is something else.

Post infectious ME was only poorly understood in that the root cause was not worked out which it shares with many other well accepted diseases like migraine.
 
Sasha said:
A truly astonishing lack of ME on that two-day programme.
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Not any more encouraging for us than it is for them. After all this time, still totally clueless. Months are being wasted even as I am seeing an increase in people developing severe symptoms and becoming evermore desperate from the impact.

What an immense failure. It will come together with time but to waste this much time avoiding the freaking obvious really does not look good for a profession that is expected to follow the evidence and just flat out refuses to.
 
chrisb said:
Whatever happened to all that "reacing out" that there was going to be. I suppose in these politically correct times one must be cautious about such things.
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Honestly I'm seeing an increasing boredom over the topic from medical professionals who aren't affected. The focus is switching to organ damage, the rest looking more and more like ME is getting about the same level of interest: it can't be measured to it doesn't exist.

Lots of people will be found to have organ damage. It will likely not be correlated with symptoms, so the symptoms will be ignored. Almost zero interest on neurological symptoms overall, they are barely recognized.

Looking too much like ME is basically putting off people from the whole thing, even when they can't even admit it to themselves. This too shall pass but it really looks like we can't avoid maximum stupid until then.
 
Rehab centres, research clinics crop up across Canada to manage COVID long-haulers

https://www.stratfordbeaconherald.c...ers/wcm/3a3969eb-fb81-4df6-ad47-da447895c45d/

Across Canada, COVID-19 follow-up, rehab and recovery clinics like the one at LHSC are cropping up to better understand and serve the needs of those who have survived the virus. The clinics are evolving as the needs of these patients are better understood.

It is becoming clear that many COVID survivors are struggling to get back to their normal lives. They are suffering from what possibly could be long-term health challenges, and experts are learning what this really means. Doctors have identified many long-term effects — shortness of breath, nerve pain, fatigue and mental-health issues. As the number of COVID cases continues to rise, experts agree that many Canadians will face long-term challenges.
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The clinic is following more than 190 patients. Some require more frequent follow-ups than others. Patients are showing persistent nerve symptoms, brain fog and confusion, and are being referred to neurologists. Many patients in the clinic also complain of weakness months after their initial diagnosis. The doctors at LHSC have noted that a significant number of patients require referrals to ear, nose and throat specialists because they have prolonged inability to smell.
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All patients undergo assessments at one, three, six and 12 months post COVID. Under the CANCOV umbrella, specialists are available to provide more detailed testing depending on the needs of the patient. More than 100 investigators with clinical and research expertise are involved. While the goal of CANCOV is to raise the standard of care for patients with COVID, it also hopes to provide clinical guidelines for policymakers, and chart a full description of the various ways COVID affects the body’s organs. There are currently 200 people being studied; ultimately, it will involve 2,000 patients and 500 caregivers. The group is also working with the World Health Organization and is collaborating with the United States, United Kingdom, Australia and Brazil.
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“Even the patients that didn’t have severe COVID were having difficulties. They were complaining of extreme fatigue, they were complaining of nerve pain, they were complaining of brain fog,” Bayley says. “Some were feeling anxiety, some were showing symptoms of PTSD and almost all were complaining of an inability to exercise,” he says.
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The complete lack of any learning from experience is becoming seriously discouraging. I don't doubt people will get around to their mental block here but to have seemingly learned nothing yet at this stage is not acceptable. Enough of that "it's brand new" crap. It isn't, you are failing completely here. Again.

The LC patient community already had far greater awareness of the basics in the first few weeks of this. I am not kidding here. Medicine still hasn't produced anything as good as the first Body Politic report, has not learned anything that wasn't readily obvious to so many even before it all began to unfold.
 
Was there really no one available with actual experience on ME and no long track record of being on the very wrong side of the issue? Disappointing. Greenhalgh has zero credibility on ME and has displayed nothing but indifference to it in regards to LC.

 
Other than the names used, this may as well have been an article on ME. It's getting annoying to see people describe the thing accurately without being aware of what they are describing. But at least word is coming from respected institutions that recovery cannot be pushed and the acknowledgement that it can happen to anyone. One angstrom-length step for man...


Mayo Clinic doctor studying Covid ‘long haulers’ says it might take them a year or more to recover

https://www.cnbc.com/2020/12/09/cov...-year-to-recover-says-mayo-clinic-doctor.html

  • It may take some Covid-19 patients more than a year to fully recover from lingering symptoms, Dr. Greg Vanichkachorn of the Mayo Clinic told CNBC on Wednesday.
  • Fatigue, shortness of breath and brain fog are among the most common symptoms of post-Covid syndrome, he said.
  • “Unfortunately, it does seem like this is something anybody can come down with after their infection,” he added.
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There's a video report that mostly says the same thing as the article. Not bad, just annoying to see actually accurate descriptions of ME from people who are oblivious that they are describing me. Mayo is still generally atrocious for chronic illness and ME specifically.
 
CNN: Covid-19's effects include seizures and movement disorders -- even in some moderate cases, study finds - by Ryan Prior

Covid-19 can lead to neurological complications, including strokes, seizures and movement disorders, researchers have found.

The complications, which go well beyond cognitive impairment, can occur even in moderate cases, according to a study published Wednesday in the journal Neurology: Clinical Practice.

"These particular complications of Covid, and neurological disorders more generally, are about your ability to interact meaningfully with the world," said lead study author Dr. Pria Anand, an assistant professor of neurology at Boston University School of Medicine. "I think that's one of the unique and devastating things about this (virus)."
 
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