A number of posts have been moved to
Structural spinal problems and ME - blogs and social media
Structural spinal problems and ME - blogs and social media
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.
Research Examines Links Between 'Long COVID' and ME/CFS
Requires log-in to read
https://www.medscape.com/viewarticle/936252
Yes, clearly.Do others think has there been shift in favour of ME being used more than CFS in the post-COVID coverage?
Yes, clearly.
Anyone able to find the recommendations document. I think it was the August 5 meeting but the link is only giving me a transcript:MPs urge Boris Johnson to meet 'forgotten victims' of coronavirus
https://www.theguardian.com/world/2...is-johnson-meet-forgotten-victims-coronavirus
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.
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.
https://www.youtube.com/watch?v=UV9NHTONrJs&feature=emb_logo
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
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.
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.
A dilemma for ‘long-haulers’: Many can’t prove they ever had Covid-19
by @dave30th
https://www.statnews.com/2020/08/26/long-haulers-dilemma-many-cannot-prove-they-had-covid19/
Unfortunately this advice is for 2 weeks only, then advises graded exercise afterward.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