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

What did you find interesting about what he said?

 

That he presumes people with Long Covid will get better. And that he makes public statements along those lines.

 

They need to believe that they will get better because they cannot yet emotionally deal with the possibility of never getting better.

 

Words have many uses.

 

And similarly that might drive a push to not wanting to accept/be seen as having ME/CFS.

 

However nobody can plan or prepare if they get misleading information. This is the benevolent lie argument. If they were warned we literally do not know and cannot predict, and given facts and figures such as currently exist, then they could advocate for medical research now rather than wait a year or two until those who don't recover finally realize it.

 

Given past history it seems likely they will just redefine things so that people will get better.

Probably by means of redefining things so that any health problems are no longer seen 'medically' as such, are seen as malingering, or neurotic, or attention seeking, etc.

So, not only will everyone get 'better' they will never have had anything to get 'better' from in the first place.

As evidence for this hypothesis I cite the last 30 odd years, and recent attempts to imply that long civd is a mental health issue, by saying that psychiatric conditions, previously diagnosed or not, are a predisposing factor.

Bad for those with such conditions, but good for BPS practitioners, health services, government, and insurance companies, and are those are the people in charge......

(I'm not implying that I think that those conditions are not serious, just that they are not seen as such by the medical professions, including a significant, and powerful, element that makes it's living off not providing actually helpful treatment for them)

 

Good response from Robert.
https://twitter.com/user/status/1325215238975680514

 

Thanks.

I don’t want to be too critical of Paul Garner as he’s said some helpful things about ME/CFS and I know how hard it is coming to terms with a poorly understood chronic illness amid all the conflicting information and advice that he will have been given. When I was first unwell the thought of this nightmare going on for years or decades was more than I could cope with. And still, after 28 years, it is only really the hope of getting better – or at least feeling less unwell – that keeps me going. So I can understand where he may be coming from, despite my concern about the accuracy and wisdom of his advice to Lucy Adams.

I note that there is no reference to ME/CFS in her article (https://www.bbc.co.uk/news/uk-scotland-54793726).

 

ABC News: Doctors examining possible link between chronic fatigue syndrome and COVID-19

Chronic fatigue syndrome tends to be long-lasting and cause functional impairments -- extreme fatigue following physical or cognitive activity, known as post-exertional malaise,can last for hours, days or even weeks. This prolonged fatigue after exertion makes chronic fatigue syndrome unique, said Dr. Lily Chu, vice president of the International Association for Chronic Fatigue Syndrome.

...

Scientists' and doctors' understandings of chronic fatigue syndrome have dramatically evolved in recent years. Previously, patients were encouraged to increase their physical activity over time, but now they're encouraged to understand their limitations and rest when that limit has been reached.

"Eliminate physical stress, learn pacing and energy-management methods, educate family members about the illness and intervene in a systematic way," VanNess explained.

 

my GP told me 'in ten years time this will all seem like a bad dream'. That was nearly 20 years ago.

 

Can't go wrong saying that, so long as you make no prediction as to whether the bad dream will have ended.

 

Excellent article overall, unfortunately undone by quoting Jo Daniels as a "leading expert" on ME/CFS, but at least most of her quotes are the exact opposite of what the BPS ideology has been saying for decades, which is kind of odd as it's also the exact opposite of what she herself believes and promotes.

But it does have excellent bits:

Toddler-level thinking, frankly. Lacking in object permanence and entirely stuck on first-order thinking.

A discussion of Jo Daniels' defense of CBT for ME/CFS and CBT has been moved here:
https://www.s4me.info/threads/jo-daniels-on-cbt.17799/

 

It's really something reading stuff like this (from a linked article) being acknowledged, again two existing conflicting realities:

This is literally the basis of the BPS ideology. The NHS has operated under the BPS ideology for years now, has wholly integrated it throughout its entire system and its leadership professes it at every turn and opportunity, buys into it whole. Billions have been poured into this, its main proponents are claiming such victory that they are all but demanding that their approach be the only game in town, and at the same time, after years of wasted efforts, it's evident to everyone that absolutely none of the promised goals are anywhere close to being met, that it's all a delusion.

There is no war in Ba-Sing-Se, but also Ba-Sing-Se has won the war. Up is red. Nothing matters.

 

Unfortunately belief is not a strategy and it does not feed people, pay the rent or take care of the kids.

 

That article is pretty bad.

PS:

Thanks NICE.

 

If only that were true. It should be true, but this remains what we have been begging and pleading for decades and has not found its way into medicine yet. I'm really tired of seeing these claims that things have changed when they haven't outside of very few exceptions.

Medicine is still advising the wrong thing. It's mostly from the ME community that this advice has made its way into the Long Covid conversation. Medicine is still 99% in the wrong here, only a few have relented and accepted reality yet.

 

It doing my head in, there is a very wide ranging symptoms PwME are experiencing & its misinformation & ignorance and that _ _ _ _ _ _ _ stupid CFS name that makes any of them even dream that ME =fatigue, so if you dont have fatigue you cant have ME



My head is going to explode over all this. I dont know how you can keep following it @rvallee & others you're all ruddy heros.

edited for sense

 

Pacing is not about a fitness goal! Pacing by it's nature is about maintaining a equilibrim, at whatever level that might be. Seen this incorrect definition a few times now, it's distorting the meaning of pacing and is actually describing graded exercise.

 

Social interactions is still the very worst thing I can do, if I want to ruin my mental capabilites I only need to have 45min cuppa with a friend. My brain is at it's best if i let all my mental prowess and social skills go to waste. Who are these people that come up with this stuff? If covid is anything like m.e. have they actually observed their patients?