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If there is ever a genuine cure for ME we will see the vast majority of patients quickly become active and engaged again, with no intervention or 'management' needed from 'experts'. It will happen more-or-less naturally.

One thing I wonder about is the accuray of physical activity epidemiology.

I guess even most doctors who are not too biased towards pwME will believe in numbers that are repeatedly published about the allegedly common physical inactivity of the population in general.

But perhaps it's a real problem?

Fom the wikpedia page on physical activity epidemiology:
Europe
The prevalence of physical activity in Europe is 76.6%, with 78% prevalence in males and 73.3% prevalence in females. Moldova has the highest physical activity of 88.5%, and Serbia has the lowest prevalence at 60.5%.[5]

England
59% of the population of England is sufficiently physically active, with 67% of men and 55% of women being physically active.[8]

Finland
77% of the Finnish population is physically active, with 78% and 75% of sufficiently active men and women respectively.[8]

France
In France, 76% of the population is physically active. 81% of men and 72% of women are sufficiently physically active.[8]

Germany
The prevalence of sufficient physical activity in Germany is 79%, with 81% among men and 77% among women.[8]

Moldova
The prevalence of physical activity in Moldova is the highest, at 87.5%, with 88% prevalence in men and 87% prevalence in women.[8] The World Health Organisation has been cooperating with schools in Moldova by teaching school children about the importance of adequate physical activity.[12]

The Netherlands
In the Netherlands, 61% of the population is physically active, with 63% of men and 60% of women being sufficiently physically active.[8]

Serbia
In Serbia, the overall prevalence of physical activity is 60.5%, with 67% and 56% of sufficiently active men and women respectively.[8]

Latin America and the Caribbean
The prevalence of sufficient physical activity in Latin America and the Caribbean is 60.9%,with 65.7% activity in males and 56.3% activity in females. Dominica has the highest prevalence of physical activity at 78.4%, and Brazil has the lowest physical activity at 53%.

Argentina
58.4% of Argentina’s population is physically active, with 62.4% of men and 54.7% of women being sufficiently physically active.[8]

Bahamas
56.7% of the population in the Bahamas is physically active, with 70% of men and 44.4% of female being physically active.[8]

Brazil
In Brazil, 59.6% of adult men and 46.7% of adult women are physically active. In general, 53% of its population is measured to be physically active.[8]

Chile
Chile has a relatively high physical activity among other Latin American countries, with 73.4% of its population being sufficiently physically active. 75.6% of men and 71.4% of women are physically active in Chile.[8]

Oceania and the Pacific
Australia
69.6% of Australia’s adult population is physically active, with 73% of men and 66.4% of women being sufficiently physically active.[8]

New Zealand
The general physical activity in New Zealand is relatively low, with 57.6% of adults being physically active. 60.7% of men and 54.7% of women have been measured as sufficiently physically active.[8]

Fiji
Physical activity in Fiji is relatively high, with 83.4% of its adult population is physically active. 82.8% of men and 84% of women are physically active and the difference between 2 sexes is very small as compared to other countries.[8]

United States
60% of adult citizens in the USA are physically active, with 68.3% of men and 52% of women being sufficiently active.[8]

Africa and the Mediterranean
African countries generally have higher levels of physical activity compared to other continents. Countries in Sub-Saharan Africa have a higher prevalence of sufficient physical activity than the Mediterranean.[5]

The prevalence of physical activity in Sub-Saharan African countries is 78.6% overall, with 82.1% and 75.2% prevalence of sufficient physical activity in adult men and women respectively.[8]

The prevalence of sufficient physical activity in Mediterranean countries is 61.2%, with 74.1% and 60.1% prevalence of sufficient physical activity in adult males and females respectively.[8]

Algeria
The prevalence of physical activity in Algerian adults is 66%. The prevalence of sufficient physical activity in adult Algerian males and females is 72% and 59% respectively.[8]

In 2011, it was found that 20.7% of Algerian adolescents aged 13–15 were sufficiently physically active, following the standard of having at least 60 minutes of physical activity per day for 5 or more days a week. Algerian boys and Algerian girls had 31.5% and 11.0% prevalence of sufficient physical activity.[9]

Ghana
84% of Ghana adults were sufficiently physically active, and men and women had 87% and 82% prevalence of sufficient physical activity respectively.[8]

Kenya
81% of Kenyan adults were sufficiently physically active, and men and women had 83% and 79% prevalence of sufficient physical activity respectively.[8]

Nigeria
The prevalence of sufficient physical activity in Nigeria is 78%, with 79% and 76% prevalence of sufficient physical activity in adult males and females respectively.[8]

South Africa
The prevalence of sufficient physical activity in South Africa is 53%, with 58% and 43% prevalence of sufficient physical activity in adult males and females respectively.[8]

Uganda
Uganda is the most physically active country of the world, with 94.5% physical activity as of 2016.[8]

Asia
In general, Asian countries have decreasing prevalence of activity due to mechanization of work and transport and the spread of sedentary lifestyle. The prevalence of obesity and physical inactivity are both generally high in Asia at around 60%, with Saudi Arabia with the lowest physical activity in the world at 39%.[5]

China
Physical activity prevalence in China is at 76%, with 78% in men and 78% in women.[8] Statistically recorder physical activity of men is usually higher than that of women, but the data shows similar activity level between two sexes in China. This is possibly due to the family culture, which the wife is responsible for domestic work, accounting for a certain level of physical activity of female in China.[10]

Japan
The prevalence of physical activity in Japan is 66%, with 69% in males and 64% in females.[8]

South Korea
The prevalence of sufficient physical activity in Korea is 67%, with 71% in males and 62% in females.[8]

Nepal
In 2003, physical activity prevalence in adults was 25.5% in males and 8.8% in females.[5] The level of physical activity increased rapidly from 2003 to 2016; as of 2016, Nepal had the highest physical activity among all Asian countries at 86.6%.[11]

Saudi Arabia
The prevalence of physical activity in Saudi Arabia is 54.1% for male and 34.9% for females.[7]
 
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https://www.theguardian.com/society...rus-months-nhs-clinics?CMP=Share_iOSApp_Other

Long Covid doesn’t quite describe the depths of her fatigue. “It’s not tiredness. It’s like having jet lag and a hangover. It feels like I’ve been poisoned,” she said.

The problem for Hencken and the thousands still suffering from the virus months later is that long Covid doesn’t describe much at all.

The umbrella term covers people who are breathless and fatigued, or who have brain fog, headaches and tingling arms, or who have chest pains and heart palpitations, or all of those and dozens more symptoms besides.

It does feel more and more like watching history repeat itself with the LC classification issue now being discussed as an umbrella term, and I've got mixed feelings about appropriation of our vocabulary and metaphors after watching Dr Strain's apparent disregard for ME/CFS on BBC News 24! In his possible defence he did look a bit like he was caught in the glare of a live news programme, but as others have said a clarification is warranted.
 
There's some discussion of the current treatment of "long COVID" in one of the latest videos in the Royal Society of Medicine's COVID-19 series:


The discussion turns from the treatment of acute COVID to long COVID in the 31st minute. Dr Glynne (general medicine, UCL) discusses some of the clinical presentations he's seen - he appears to be an "MCAS" believer - his empiric use of H[1] and H[2] blockers, and (unpublished preliminary) results - one relating to an abnormal T-cell phenotype and another pertaining to mast cell precursors in peripheral blood.

No explicit mention of ME/CFS, but he mentions how "for a long time, the medical profession hasn't been that interested in post-viral syndromes" but that now "a number of colleagues have actually had this disease themselves" and have been unable to work because of it, interest is growing.
 
I've got mixed feelings about appropriation of our vocabulary and metaphors

I am getting very annoyed with it, particularly when they don't mention that these are terms/metaphors that have been used by ME/CFS patients for decades, or if they do mention ME/CFS say that Long-Covid is 'not the same'; so why use the same terminology(?) argh.

On this point, this quote from the article was particularly galling:

Long covid doesn’t quite describe the depths of her fatigue. “It’s not tiredness. It’s like having jet lag and a hangover. It feels like I’ve been poisoned,” she said.

I described my illness as feeling like "the worst flu of your life combined with a nasty hangover or being poisoned" to a specialist over 20 years ago.

He just laughed at me.
 
This morning on Radio Canada I heard that a clinic has been set up for Long Covid patients in a town called Sherbrooke, which is about 100 miles outside of Montreal in a very attractive rural area. They will be testing these patients in order to try and determine what is wrong with them. The doctor who announced this said there may be more than one such clinic being set up. There was no mention of ME/CFS. It was an interview actually, not a news announcement.

This is positive and I hope they come up with some answers, but all the poor ME patients in Montreal are languishing in their beds, unattended.
 
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I am getting very annoyed with it, particularly when they don't mention that these are terms/metaphors that have been used by ME/CFS patients for decades, or if they do mention ME/CFS say that Long-Covid is 'not the same'; so why use the same terminology(?) argh.

Yes, it is appropriation.
It is very disheartening. ME patients have been invisible for decades, and now the Long Covid community is appropriating itself the terms that we have created and that we use. That includes their testimonies in the media, who believe them and spread their stories while ME is barely even mentioned or is cast aside as "chronic fatigue".

Rubbing salt in the wound and it's not going to stop soon.
 
Given the increasing number of differences we find between the sexes-

Why did we ever think the response would be the same ?

Given that initial LC studies show a pretty even prevalence between men and women, I’m wondering if this is initially true of most other PVFSs and that more men recover over time revealing the 75% women 25% men ME prevalence of those who don’t recover.
 
It is very disheartening. ME patients have been invisible for decades, and now the Long Covid community is appropriating itself the terms that we have created and that we use.

I agree, but it's probably inevitable. If people are trying to discuss a phenomenon that isn't easy to describe succinctly and then stumble across a word or phrase that really seems to nail it, they'll naturally tend to find themselves using it.

What irritates me isn't so much the adoption of useful terms, but the lack of acknowledgement of the source.
 
I find this use of the term 'appropriation' strange in this context, and don't blame people, struggling and very sick like us, for wanting to tell their stories in the media. It's not their fault pwME have been shamefully neglected, nor that terms and images used in ME/CFS are useful for them too. After all, it seems likely many using the terms like energy envelope and using battery analogies fit the ME/CFS diagnostic criteria too, so using images use in ME/CFS seems sensible. Whatever terms patients with any disease find useful seems legitimate to me.

However I am angry at doctors who persist in dismissing ME/CFS as irrelevant, and who suggest it's just fatigue and therefore different from the long Covid patients with PEM and other ME/CFS symptoms.
 
I find this use of the term 'appropriation' strange in this context, and don't blame people, struggling and very sick like us, for wanting to tell their stories in the media. It's not their fault pwME have been shamefully neglected, nor that terms and images used in ME/CFS are useful for them too. After all, it seems likely many using the terms like energy envelope and using battery analogies fit the ME/CFS diagnostic criteria too, so using images use in ME/CFS seems sensible. Whatever terms patients with any disease find useful seems legitimate to me.

However I am angry at doctors who persist in dismissing ME/CFS as irrelevant, and who suggest it's just fatigue and therefore different from the long Covid patients with PEM and other ME/CFS symptoms.
I agree. Was trying to think how to say it but you nailed it Trish.
 
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