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

Status
Not open for further replies.
Person who doesn't know much about X: "this is clearly not like X"

"And how much do you know about X?"

"That this is clearly not like X"

Proceeds to describe X but insists it's different because reasons

Right. Carry on. One thing I do know about that thing is that it's definitely different than a thing I know nothing about. Illness after a virus is obviously not post-viral illness, Shirley.

I do love the meta-irony of people dismissing ME out of concern that it's dismissive to post-COVID. Which, uh, hello?
 
Kalliope said:
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.
Click to expand...
 
Kalliope said:


Click to expand...

Good article but the part about PEM happening 1-2 days later "rather than" immediately is not accurate. It depends a lot, the 1-2 days delay is the odd thing out, but I often crash pretty immediately from too much exertion. It's both and the delayed effect is the weird one, but it's not mutually exclusive.

I'm a little too worn out to argue that, though.
 
Last edited:
From the article:

Clinically, Chu stated, one option to assess whether or not a affected person with persistent COVID-19 signs could be progressing to ME/CFS is to ask her or him particularly concerning the stage of fatigue following bodily exertion and the timing of any fatigue. With ME/CFS, post-exertional malaise typically includes a dramatic exacerbation of signs comparable to fatigue, ache, and cognitive impairment a day or two after exertion reasonably than instantly following it. In distinction, shortness of breath throughout exertion is not typical of ME/CFS.
Click to expand...

Feeling out of breath and racing heart in my experience during a viral infection is common for me, and "PEM" will come on immediately after exertion. The delayed PEM occurs when I've gone over my 'energy window'. I don't feel out of breath and my heart does not race. It's a whole different experience.​
 
This is sort of relevant, although it's approaching from entirely the diagonally opposite end of the spectrum, i.e. people who are "fit and healthy":

http://www.msn.com/en-gb/health/fam...on-new-evidence-shows/ar-BB18lWMt?ocid=ASUDHP

In short, exercise can make COVID-19 worse. For cyclists and other active people who generally turn to physical activity to boost circulation and feel better faster when they’re a little under the weather, this is new and urgent news, says Jordan Metzl, M.D., a sports medicine physician at Hospital for Special Surgery in New York.
Click to expand...
 
Wits_End said:
This is sort of relevant, although it's approaching from entirely the diagonally opposite end of the spectrum, i.e. people who are "fit and healthy":

http://www.msn.com/en-gb/health/fam...on-new-evidence-shows/ar-BB18lWMt?ocid=ASUDHP
Click to expand...

This is the paper the article is based on

https://link.springer.com/article/10.1007/s11420-020-09777-1

Considerations for Return to Exercise Following Mild-to-Moderate COVID-19 in the Recreational Athlete

"The COVID-19 pandemic has resulted in significant morbidity and mortality around the world. The spectrum of COVID-19 is broad, from clinical disease requiring intensive medical care to less severe symptoms that are treated with supportive care. The majority of COVID-19 cases fall into the mild-to-moderate category, with symptoms lasting less than 6 weeks. Nevertheless, the morbidity from COVID-19 is significant and can affect multiple body systems, most frequently the cardiac, pulmonary, hematologic, musculoskeletal, and gastrointestinal systems. For patients who wish to return to exercise after mild-to-moderate COVID-19, the wide range of disease expression presents a challenge for clinicians seeking to offer counsel. This literature review on return to activity following mild to moderate COVID-19 in the recreational athlete includes evidence-based considerations and recommendations for clinicians in guiding the safest return to activity."
 
Last edited:
‘Gaslighted by the Medical System’: The Covid-19 Patients Left Behind

Since the coronavirus can also incite vague, hard-to-measure (and treat) symptoms, such as fatigue, headache, and brain fog, it is the perfect type of ailment to inspire physician disbelief, especially among women. “If there hasn’t been enough medical research about a disease yet, there are a lot of patient reports that [doctors say] the problem ‘isn’t real,’” Lambert says.
Click to expand...

https://elemental.medium.com/gaslig...he-covid-19-patients-left-behind-3ee0d3419197
 
A dilemma for ‘long-haulers’: Many can’t prove they ever had Covid-19
by @dave30th

As the coronavirus pandemic rolls on, an unknown number of seemingly recovered patients are experiencing what is being called post-Covid syndrome — weeks or months of profound fatigue, fevers, problems with concentration and memory, dizzy spells, hair loss, and many other troubling symptoms. Among these “long-haulers,” as they have become known, a significant number face a very specific challenge: convincing others they had Covid-19 in the first place.

Because of widespread supply shortages and overwhelmed medical providers, many who sought viral testing in the first months of the pandemic were refused for not meeting strict criteria. Others decided on their own to self-quarantine. Some, like wildlife veterinarian Emily Talkington, received negative results from local testing sites despite clinical signs of the disease.
Click to expand...

https://www.statnews.com/2020/08/26/long-haulers-dilemma-many-cannot-prove-they-had-covid19/
 
Wits_End said:
This is sort of relevant, although it's approaching from entirely the diagonally opposite end of the spectrum, i.e. people who are "fit and healthy":

http://www.msn.com/en-gb/health/fam...on-new-evidence-shows/ar-BB18lWMt?ocid=ASUDHP
Click to expand...
Unfortunately this advice is for 2 weeks only, then advises graded exercise afterward. :banghead:

It's getting incredibly frustrating seeing all the worst possible mistakes being made many times over while we could actually help medicine avoid all of those mistakes and accelerate research, cutting months, if not years, of wasted efforts. Such a stupid system to reject relevant knowledge presented on a silver plate like that.

All they have to do is listen to the patients. But they just don't want to because medicine still operates like we're in the 15th century and everyone who isn't a medical doctor or a scholar must be an illiterate simpleton. The patients are telling them everything they need to do better and they just spit on it, insist on committing every mistake to its fullest extent.

We could probably save a full calendar year of wasted efforts, and billions in opportunity cost, right here and now by doing this. But nooooooo, medicine has to be by physicians for physicians, nothing can penetrate the bubble.
 
Status
Not open for further replies.
Back
Top Bottom