Article and Documentary BBC: Long Covid: Early findings bring hope for diagnostic tests

From the quote box in post 1 of this thread :

But she warned that long Covid was a "complex condition", saying it was important to continue to research the other causal factors so all different types of post-Covid syndrome could be diagnosed and treated.

I hate seeing any medical condition described as "complex". It seems to me to be a way for doctors to deceive patients into believing they will be taken seriously. What it really appears to mean in practice is that the doctor thinks the condition is a mental illness, and the only thing the patient is likely to receive is a prescription for anti-depressants and a dismissal making it clear the doctor isn't going to investigate further.
 
MEMarge said:
Program much better than feared. No mention of PG.

Very clear that she is far from recovered.
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The continued pretense that this is all new is getting beyond frustrating. It's blatantly false and maintained only because admitting otherwise means revealing decades of failure. The omerta is too obvious.

But the problem remains of how can journalists cover this and inform the public when medicine is all over the place with it, still largely in denial and pushing something closer to medical theology. I can barely imagine how we'd deal with climate change if climate scientists were that confused, and we are still having massive difficulties with it. Except there aren't trillions in investments on the way, this is all purely ideological.

It appears to have been better than expected but still keeps with the state of denial. There is no more future for long haulers than there is for us as long as this remains, the obstacle is the same. And as time goes by it only makes medical expertise that much less credible, unable to see the bloody obvious again and again.
 
For some reason, I can't get past the sign-in on the BBC website. This is despite being permanently signed-in on the BBC, as I found last night when checking the footie score.
 
Arnie Pye said:
From the quote box in post 1 of this thread :

But she warned that long Covid was a "complex condition", saying it was important to continue to research the other causal factors so all different types of post-Covid syndrome could be diagnosed and treated.

I hate seeing any medical condition described as "complex". It seems to me to be a way for doctors to deceive patients into believing they will be taken seriously. What it really appears to mean in practice is that the doctor thinks the condition is a mental illness, and the only thing the patient is likely to receive is a prescription for anti-depressants and a dismissal making it clear the doctor isn't going to investigate further.
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So true. Any language such as complex, multifactorial etc is a HUGE red flag. It means “needs psych referral”.
 
I suppose it all depends on what is meant by "new" and "disease". The very obvious vocal damage looks new for typical ME, but everything else looked the same. Is this sufficient distinction to create a new disease? And should that be "illness" anyway?

It may all just be about words.
 
From the article:

According to Prof Carson, my long Covid symptoms should be reversible.

He describes them as a typical "constellation" and explains that while my brain looks ok structurally on the scan there seems to be some problems in the way it is anticipating and monitoring what I do.
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Is it possible to measure accurately how my brain anticipates and monitors what I do?
 
So, what did last night's BBC 'Panorama' programme, 'Long Covid: Will I Ever Get Better?' tell us about long-COVID? (https://bbc.in/3eczYGy iPlayer for 11 months)
Our Top 10 - considering that no mention made of ME/CFS in the programme :
1. Estimated that c1m may have long-COVID of which c33,000 are children; and most affected are female. 120,000 healthcare professionals have long-COVID.
2. 1 in 8 who contract COVID go on to get long COVID.
3. 1 in 3 will have long-COVID for more than 1 year.
4. 1 in 5 experience memory issues & brain fog.
5. What are causes? Post-COVID - organ damage, virus re-activating, immune system issues or combination of some/all?
6. £60m in central funding in UK for research into long-COVID.
7. Prof Danny Altmann ICL - looking at autoantibodies which attack body's tissues/proteins. If found, a diagnostic test a possibility.
8. He would be disappointed if most with long COVID not recovered or feeling significantly better within 2-3 yrs.
9. After 4 months of COVID, two thirds of patients have a degree of organ damage but improvement seen at next consultation.
10. Clinics - 89 in England (long waiting lists and some only take those who were hospitalised). Government has invested £134m in long COVID services. None in Scotland or Wales and Northern Ireland provision starts in Oct
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Code: 
https://www.facebook.com/MEResearchUK/posts/4491623754216180

 
Well I've just watched the panorama program. Galling in the extreme to hear patients and experts unanimously calling it a new illness. The virus guy will be surprised if most people don't recover within a couple of years (based on what he knows about other post viral conditions), and expects to have a diagnostic test within 6 months. He is by his own admission "famously optimistic". The brain guy assures us that he expects most people will return to normal unless they have lasting organ damage.

So what am I supposed to think? Lots of new patients basically in their first year of ME, thinking and feeling as we all did - how long will this last, will I ever get better, still sometimes pushing through and trying to get back to normal, and feeling put out that those who see them when they are well enough to cycle or go to the shops don't understand how ill they are. Over optimistic "experts" smiling reassuringly at the camera offering hope based on god-knows-what. 134 million (is that a large number?) spent on long covid centres where you can have an appointment with baffled but well-meaning staff, have a range of tests which come back normal, and see a physiotherapist.

The central patient in this documentary works for the BBC. The panorama documentary was made by the BBC. The experts study viruses and the brain. And not one of them have ever heard of ME? This is a baffling new illness? I am supposed to watch this and feel what exactly? Where were our prime-time documentaries? Who's bothered watching us for the last 4 decades? Sadly the only way for us to make real progress is if enough people get ME for it to become un-ignorable, unsweepable under the carpet, when everyone knows someone with it and enough important people and health staff have it. The only way to steamroll the political battle out of the way is when enough people have it that everyone knows the BPS narrative and health and government policies based on it are bullshit. Well now it's happening, and it wasn't our choice to do it this way. It's a tragedy that it has to be like this for there to be any realistic hope of a cure in my lifetime. If ME had been taken seriously four decades ago researchers would be ready for long-covid and know where to look instead of starting from scratch with optimism and vague hypotheses. What are people who've had ME for decades supposed to feel now exactly?

I feel a little bit miffed.
 
And another thing ... this probably isn't going to be the last pandemic or the worst one, so they'd better pull their finger out before the next virus comes along, or they'll have millions of long covid sufferers saying "Well if you'd taken us seriously at the time, you wouldn't be in this mess."
 
It's M.E. Linda said:
I asked/suggested an alternative Control Group:

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Thank you. Someone wrote this on Facebook:

“dr Danny Altmann was a speaker at a longcovid medical webinar recently (which insultingly had sir Simon Wessely as a chair for a session) Dr shepherd, who attended, said whilst discussing ME type issues, none of them referred to ME or acknowledged it as in the same boat. apparently an immunologist , who might have been Professor Altmann I don’t know, just said when asked on overlap with Chronic Fatigue Syndrome that that they couldn’t help as they didn’t understand CFS.”
 
anniekim said:
Thank you. Someone wrote this on Facebook:

“dr Danny Altmann was a speaker at a longcovid medical webinar recently (which insultingly had sir Simon Wessely as a chair for a session) Dr shepherd, who attended, said whilst discussing ME type issues, none of them referred to ME or acknowledged it as in the same boat. apparently an immunologist , who might have been Professor Altmann I don’t know, just said when asked on overlap with Chronic Fatigue Syndrome that that they couldn’t help as they didn’t understand CFS.”
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Dr Charles Shepherd is also quoted in a 12.7.2021 article:

Shepherd says: “I would have thought in something like [Altmann’s research] it would be useful to have another control group of people with an overlapping condition like ME/CFS. Then you could test some samples in our biobank to see whether or not they’re producing the same results.”

here:

https://www.medicaldevice-network.com/features/long-covid-blood-test/
 
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