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

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This article is from two days ago, but I don't think it has been shared here yet.

It's about how journalists can approach 'long-haulers' with consideration and respect. I assume quite a lot of this can be transferred to ME patients as well. ME is also mentioned in the article.

It's written by Fiona Lowenstein, founder of the Body Politic COVID-19 Support Group and one of the initiators to the online study that @rvallee shared news about a few posts above in this thread here

Columbia Journalism Review - How to cover COVID-19 patients sensitively

While many covid-19 patients deal with debilitating fatigue, many journalists seem unaware of this symptom and its impact on patients’ lives. After I was discharged from the hospital, I experienced daily fatigue, accompanied by splitting headaches and eye pain. Researchers have since drawn links between long-haul covid-19symptoms and myalgic encephalomyelitis (ME), a complex chronic disease. People with ME and those who treat them often advocate for “pacing,” an energy-management technique that many covid-19patients also utilize. During a recent BBC interview in which I appeared alongside Paul Garner, a tropical-disease specialist and covid-19 patient in my support group, Garner described needing to schedule rest before the interview in order to participate.
 
No mention of ME but then again this is kind of meta considering the bafflement. Of course there's a lot more than ME/PVFS at play here but it's so weird seeing the disconnect of physicians saying medicine has known about "post-viral fatigue" for a long time but also know nothing about what to do or what it is beyond hoping it magically goes away and doesn't exist if you don't test for it, I guess. So they've both known, are completely baffled and have done nothing to know more. It's meta-bafflement: they are baffled because of all the prior bafflement. And now I'm fairly sure this here is the paragraph containing the most uses of the word baffled in history. Baffled baffle.

 
@rvallee I don't think there is much any doctor can do for PVFS except advise their patient to rest and wait it out. If they go through testing and have symptoms such as heart issues, low BP etc., then those are treatable with medications. What else should they do?

I had 'extremely' elevated anti-thyroid antibodies after my sudden viral onset and was told by an endocrinologist after my thyroid scan that I will feel sick for many months. There really wasn't much else to do.
 
Mij said:
@rvallee I don't think there is much any doctor can do for PVFS except advise their patient to rest and wait it out. If they go through testing and have symptoms such as heart issues, low BP etc., then those are treatable with medications. What else should they do?
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Research it, so they're less baffled?

Doesn't really apply to primary care physicians, of course. All they can do is follow best practice: rule out other possibilities, advise rest, explain pacing, and support applications for sickness allowances. It appears this is still too difficult for many (most?) of them, but obviously I take your point about limited treatment options.

But there's no excuse for the absence of research, the culture of denial, the policy void, and the building of highly-paid, prominent careers on psychosocial approaches that fail even the most rudimentary scientific tests.
 
Kitty said:
But there's no excuse for the absence of research, the culture of denial, the policy void, and the building of highly-paid, prominent careers on psychosocial approaches that fail even the most rudimentary scientific tests.
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I agree with you on this 100%. Clinicians and researchers have focused on the acute phase of COVID-19, but continued monitoring after discharge for long lasting effects is needed. Hopefully this will bring a new world wide awareness on PV syndromes and benefit pwME too!
 
Mij said:
In the meantime, the best #1 advice doctors can give to their patients right now is not to exercise or push themselves.
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The needs are much more pressing. People can't indefinitely go without income. People are already losing their job. Not everyone has a spouse or family who can help with daily things or taking care of kids. Not being able to function is a big deal. And as we all know disability systems are completely broken on purpose, they are not there to help.

Everything begins at recognition. Saying "this exists but whatever" is not recognition, it's dismissal. People need sick leave, temporary income, community support. Over time they need the same things pwME need: food, shelter, security. Most people can't simply rest for several months, it's simply not a thing. Some people were in economic transition, maybe had taken loans to start a business or were between jobs and were caught flat-footed. Medicine has to completely transform itself away from its ridiculous beliefs about MUS and rejection of the unknown. It breaks everything here.
 
Kalliope said:
World Neurology - The Official Newsletter Of The World Federation Of Neurology - has an article by Avindra Nath and B. Jeanne Billioux titled: Long-Haul COVID.

Many of these symptoms overlap with those of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The cause of ME/CFS remains unknown despite decades of research of the syndrome. Many of these patients similarly report a viral infection as a trigger, but since they come to our attention months and years after symptom onset, it is impossible to know what may have triggered the symptoms.

Long-Haul COVID thus represents as excellent opportunity to study the pathophysiology of ME/CFS that may have broader implications.

Article begins at page 1 and continues at page 3:
https://wfneurology.org/private/downloads/dmOeL3cfAVtVLhXhvm1Rnw/wn_jun_jul_20.pdf
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https://n.neurology.org/content/neurology/early/2020/08/10/WNL.0000000000010640.full.pdf

Looks to be published in Neurology journal soon.
 
Don't think I've seen this posted, was published July 25.


COVID-19 “Long Hauler” Symptoms Survey Report

https://static1.squarespace.com/static/5e8b5f63562c031c16e36a93/t/5f25b5bfb3f4f86b1bf4d5f5/1596306894541/2020+Survivor+Corps+COVID-19+'Long+Hauler'+Symptoms+Survey+Report+(revised+July+25.1).pdf

Interpretation of Findings: The results of the analysis suggest that Long Haulers’ COVID-19 symptoms are far more numerous than what is currently listed on the CDC’s website. While the symptoms listed on the CDC’s website are, except for nausea or vomiting, some of the most common COVID-19 symptoms reported by Long Haulers, the mismatch between the health problems people are experiencing and the information that they can find from official health sources is noticeable and a potential cause for concern.
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Much of the report is in graphs, basically confirming the findings of the Body Politic report. I can't find the number of respondents. The report emphasizes that pain is a missing element and has a graph showing the mismatch between commonly reported symptoms and those acknowledged in guidelines.

Most common reported symptoms:
Fatigue 1,567
Muscle or body aches 1,046
Shortness of breath or difficulty breathing 1,020
Difficulty concentrating or focusing 924
Inability to exercise or be active 916
Headache 902
Difficulty sleeping 782
Anxiety 746
Memory problems 714
Dizziness 656
Persistent chest pain or pressure 609
Cough 577
Joint pain 566
Heart palpitations 509
Diarrhea 506
Sore throat 496
Night sweats 475
Partial or complete loss of sense of smell 460
Tachycardia 448
Fever or chills 441
Hair loss 423
Blurry vision 418
Congested or runny nose 414
Sadness 413
Neuropathy in feet and hands 401
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98 symptoms listed in total, with some of the understudied ones often found in ME like blurry vision, tinnitus, cramps, flashes or floaters in vision, night sweats, pain in the hand and feet.

Article talking about it: https://elemental.medium.com/new-survey-identifies-98-long-lasting-covid-symptoms-87935b258a3e. The article states the # of respondents is 1,567 but I can't find confirmation.
 
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