Cannot access this in UK, what sorts of investigations/scans/treatments are they offering?
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News about Long Covid including its relationship to ME/CFS 2020 to 2021
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Cannot access this in UK, what sorts of investigations/scans/treatments are they offering?
rvallee
Senior Member (Voting Rights)
What I've seen suggests most are focused on rehabilitation, mostly through diet, exercise and sleep hygiene, and haven't really accepted the reality that it doesn't work like usual (even though most do seem to recognize it, just haven't accepted the conclusions without trying more of the same). Standard tests to reassure it's not something "serious", the rest is the usual attempts at "think happy thoughts and exercise". Mostly the usual tripe, just not necessarily couched in the usual BPS framing but still almost identical.
Frankly I'm not envious of any of it. It's "attention", the kind that does nothing. Nobody knows what to do or even understands the underlying problem, so it's not as if sheer gumption or whatever is going to make a difference this time, or any time. This is a basic research problem, treatments are wayyyy off without a theoretical basis.
The only useful outcome of this yet-again predictable commitment to failure will be to invalidate the rehabilitation model and, with time, the psychological voodoo. So there's that. But there's no telling how many more months or years it will take to learn from this experience. There will be no doubt more commitment to the silliest things before people accept that working hard is no substitute for working smart.
Mij
Senior Member (Voting Rights)
"Patients will have access to a battery of specialists, including cardiologists, neurologists and lung, kidney, and vascular specialists, as well as psychiatrists and psychologists, who can address the mental-health impacts of the disease, she said. Many patients with long-term effects of the coronavirus have multiple problems, so they will need to see more than one specialist".
"At St. Charles Hospital, a Catholic Health Services of Long Island hospital in Port Jefferson, a post-coronavirus rehabilitation program began in September with a focus on medically supervised physical therapy and strength training"
"A big benefit of the clinic is that doctors there will build up expertise in COVID-19 by treating patients and discussing cases with other physicians, and they’ll be responsible for keeping up with COVID-19 studies and developments from around the world, McGovern said".
I have been thinking that the possibility of Long Covid is potentially a powerful tool for getting people to comply with regulations to limit the spread of Covid-19. I've been wondering why publicity about Long Covid hasn't been used more in those countries that have been actively trying to get public compliance. I guess there is the down-side that it could make finding health care workers to work with Covid-19 patients a whole lot harder.
I contacted our national Nurses Organisation yesterday (effectively the trade union for nurses) to ask why I couldn't see any mention of post-viral effects in their otherwise extensive online information about Covid-19. This is in the context of a number of the people working in our Managed Quarantine facilities contracting Covid-19, and criticisms of the personal protective equipment provided to these workers.
I contacted our national Nurses Organisation yesterday (effectively the trade union for nurses) to ask why I couldn't see any mention of post-viral effects in their otherwise extensive online information about Covid-19. This is in the context of a number of the people working in our Managed Quarantine facilities contracting Covid-19, and criticisms of the personal protective equipment provided to these workers.
leokitten
Senior Member (Voting Rights)
All the specialists in one place, cardiologists, neurologists, pulmonologists, etc. Psychiatrists and therapists for mental health aspects of dealing with long COVID (but not saying it’s all in their heads!!!). Standard specialist tests of heart, lungs, etc to diagnose or track possible organ damage and their improvements. Doesn’t look like any more than symptomatic treatment or for known issues of course targeted treatments.
My vote is it will eventually become clear to these physicians and clinics as the months and more go by and they are trying to understand what is causing this that they will hit a wall as a significant fraction will never get better. Hopefully then they will wake up and say, “wait wasn’t there this disease from before COVID with millions of sufferers that is EXACTLY like what we are seeing here?”
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Kalliope
Senior Member (Voting Rights)
Comment on this editorial by Peter White in Nature:
Long COVID: don't consign ME/CFS to history
Your use of the past tense — for example, in saying that people with ME/CFS “struggled” to have their condition recognized, they “were not” listened to and the “patient voice was marginalized” — wrongly implies that those problems have been solved. The reality is that the tragic situation continues.
https://www.medpagetoday.com/blogs/vinay-prasad/89564?xid=nl_mpt_DHE_2020-11-10&eun=g1139006d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=Daily Headlines Top Cat HeC 2020-11-10&utm_term=NL_Daily_DHE_dual-gmail-definition
Op-Ed: More Science, Less Speculation on COVID Long-Haulers
— We need more trials -- more clarity -- and not just for treatments
Does not mention MECFS
Op-Ed: More Science, Less Speculation on COVID Long-Haulers
— We need more trials -- more clarity -- and not just for treatments
Does not mention MECFS
"Researchers from ukactive and the AWRC will begin an initial three-year plan by focusing on how physical activity can support COVID-19 rehabilitation to inform Government decisions as Europe comes to terms with the pandemic."
https://www.ukactive.com/news/the-a...sical-activity-at-heart-of-covid-19-recovery/
@PhysiosforME, they are running a seminar tomorrow.
Tomorrow (2pm Wednesday 11 November), researchers and academics will join a dedicated online seminar at the ukactive National Summit, called ‘Measuring and creating effective interventions in health and wellbeing’. To book your free place, visit the National Summit website.
https://www.ukactive.com/news/the-a...sical-activity-at-heart-of-covid-19-recovery/
@PhysiosforME, they are running a seminar tomorrow.
Tomorrow (2pm Wednesday 11 November), researchers and academics will join a dedicated online seminar at the ukactive National Summit, called ‘Measuring and creating effective interventions in health and wellbeing’. To book your free place, visit the National Summit website.
PhysiosforME
Senior Member (Voting Rights)
Ooh thanks for the tag
rvallee
Senior Member (Voting Rights)
Millions of patients: we need research
Medicine: no
More patients: please research this
Medicine: never
Even more patients: here we funded a bunch of early research can we have more resources?
Medicine: grasping at straws
The biggest more patients ever: we need research
Medicine: I know! Here's what we should do: research!
Sigh
Decades late, my dude. Even in the very specific case of Long Covid, still very late. It really shouldn't take decades for people to do the bare minimum. Pfft.
Medicine: no
More patients: please research this
Medicine: never
Even more patients: here we funded a bunch of early research can we have more resources?
Medicine: grasping at straws
The biggest more patients ever: we need research
Medicine: I know! Here's what we should do: research!
Sigh
Decades late, my dude. Even in the very specific case of Long Covid, still very late. It really shouldn't take decades for people to do the bare minimum. Pfft.
rvallee
Senior Member (Voting Rights)
Covid Long Haulers Describe the Devastating Aftereffects of the Disease
https://www.bloomberg.com/news/feat...heir-symptoms-and-the-aftereffects-of-disease
Several testimonials below.
https://www.bloomberg.com/news/feat...heir-symptoms-and-the-aftereffects-of-disease
Actually not all "novel" but go on.
Can you imagine if that worst-case scenario was already the current-case scenario? Haha, imagine that. That would be bad, uh? It would pretty much add up to trillions in economic losses. Whew, that would be very bad indeed if it happened. Especially if it did happen and nobody paid attention. Ooooh boy that would be bad.
Several testimonials below.
leokitten
Senior Member (Voting Rights)
“The condition [ME/CFS] shares some of the symptoms of long COVID”
Some? How about most? Am I just blind or everyone who writes these ridiculous articles simply fails to do their due diligence and actually compare the symptoms and their prevalence between both diseases.
Look at the SurvivorCorps and other high quality long COVID reports, even simply look at the word cloud at the top of the Bloomberg piece @rvallee already posted in this thread https://www.bloomberg.com/news/feat...heir-symptoms-and-the-aftereffects-of-disease
Most of the symptoms are the same. To me, the hallmark symptom that I’m just waiting so see how it pans out is PEM.
With long COVID there are some confounding factors in a subset of patients which are myocarditis, lung scarring, and blood clots, each of which can contribute to feeling worse after exertion. But a significant percentage of long COVID patients have none of these complications and they still feel worse after exertion.
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rvallee
Senior Member (Voting Rights)
Unfortunately the most direct success of having reframed ME as fatigue and nothing but fatigue. People can't compare to something when they've been disinformed about what it is in the first place.
rvallee
Senior Member (Voting Rights)
Fauci swinging back and forth being a tease about ME when he talks (yes, I'm doing phrasing).
He mentions a bit that the range of symptoms is unusual for other post-viral syndromes, but doesn't mention the umbrella. Otherwise it's mostly fine but speaks of several research projects that are still mostly unknown. The tone suggests this is taken with some level of seriousness. Unfortunately that tone has often been used without substance so who knows.
It's only a small clip, the whole interview is linked but I don't have the energy to watch right now.
He mentions a bit that the range of symptoms is unusual for other post-viral syndromes, but doesn't mention the umbrella. Otherwise it's mostly fine but speaks of several research projects that are still mostly unknown. The tone suggests this is taken with some level of seriousness. Unfortunately that tone has often been used without substance so who knows.
It's only a small clip, the whole interview is linked but I don't have the energy to watch right now.
leokitten
Senior Member (Voting Rights)
And every symptom Fauci lists in that clip regarding long COVID are some of the most prominent symptoms of ME, except for the shortness of breath.
leokitten
Senior Member (Voting Rights)
I saw in the Twitter replies that someone mentioned the same thing I just said, and I agree that not everyone with long COVID will get re-diagnosed as ME/CFS, but yes like others here I’m tired of the dance around the subject.
Can someone of prominence please have the courage to discuss long COVID and ME/CFS together, how most of the symptoms overlap, and how,
given the evidence and history with other viruses (like SARS), there is significant likelihood that many with long COVID who never recover will actually turn out to have ME/CFS?
And honestly I don’t care if members of long COVID community get angry about the striking resemblance and association with ME/CFS, too bad you can’t wish away reality no matter how hard you want to. It’s the same with the morons in the US who think the virus is just not serious and will go away, no amount of dumbthink will make it just disappear.
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The tipping point will come when the artificial distinction between some with "long covid" and those with ME leads to discriminatory practices in favour of long covid, either in terms of care or finance.
Fauci needs to find a way of escaping history before reasonable progress can be made. That seems to be a restrainjng factor.
Fauci needs to find a way of escaping history before reasonable progress can be made. That seems to be a restrainjng factor.
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