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

[Dolphin]

The Pat Kenny Show on a national radio station in Ireland
Friday, October 23
https://www.newstalk.com/listen-back
01:24:15-01:33:03
Dr Elaine Maxwell of UK NIHR

ME gets a fleeting mention when she says we have existing ways to treat brain fog and psychologists have a number of strategies and we have learned a lot from other postviral syndromes such as ME

See she says that there will be a NIHR funding appeal opportunity soon to study long Covid in those who weren't hospitalised which sounds promising.

 

[Esther12]

See she says that there will be NIHR funding appeal opportunity soon to study long Covid in those who weren't hospitalised which sounds promising.

I don't know. The NIHR has been funding Crawley a lot. Could be worse than nothing. The rest of your summary of what she said didn't inspire much confidence either.

 

[dave30th]

The NIHR has been funding Crawley a lot

what was the last funding of Esther?

 

[Esther12]

what was the last funding of Esther?

Some info here: http://www.bristol.ac.uk/academic-child-health/grants/

Of those listing Crawley by name, there are these from 2019:

National Institute for Health Research (NIHR) Research for Patient Benefit (RfPB) Programme: £149,000. Measuring Health in Children with CFS/ME: Refinement, application and evaluation of new PROM (PEACH) in routine practice. Esther Crawley and Roxanne Parslow. February 2020-2022

NIHR. Applied Research Collaborations West. £8,999,999. PI John Macleod. Esther Crawley Theme lead for Child health. Oct 2019 – 2024

Following SMILE:

Linbury Trust charity. Exploring the mechanisms of action of LP and applying for funding to replicate a treatment trial for children with CFS/ME. Dr Emma Anderson, Professor Esther Crawley, Miss Lucy Beasant, Dr Rebecca Barnes, Dr Nicola Mills, June 2018 - November 2019 £265,487

Older ones:

2015 - 2016
NIHR - Conservative treatment of appendicitis in children – a randomised controlled trial – CONTRACT (Feasibility Study). (CoA) Esther Crawley with (PI) Nigel Hall.£444,985.63 (2016 – 2019)

NIHR - Health Technology Assessment. Investigating the effectiveness and cost effectiveness of using FITNET to treat paediatric CFS/ME in the UK. (PI) Esther Crawley, (CoA) Elise Van de Putte, Sanne Nijhof, Hans Knoop, Gils Bleijenberg, Paul Stallard, David Kessler, Harriet Downing, John Macleod, Simon Price.£999,977.80 (2016-2021)

Action for ME – Severe Paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): British National Surveillance Study (PI) Esther Crawley. £6,000.00 (2016 – 2018)

RNHRD – Severe Paediatric Chronic Fatigue Syndrome/Myalgic Encepahlopathy (CFS/ME): British National Surveillance Study. (PI) Esther Crawley. £6,000.00 (2016-2018)

NIHR – An Investigation of the treatment of paediatric CFS/ME. (PI) Esther Crawley. £864,736.00. (2014 – 2018)

 

[Andy]

The NIHR has been funding Crawley a lot.

And they are providing part of the funding for DecodeME. Always best to look at the detail of each project rather than tar the entire process with a bad reputation due to a few decisions on funding that we don't agree with.

 

[Andy]

When I break down my TV scripts as an Actress, I often use a single word or sentence to sum up each “episode.” Act 1 is synopsised, “I am worried.”

I am worried for the Long Haulers inevitably left to navigate post-viral fatigue in the dark. Long Covid patients are dipping their toe into the sea of medical gaslighting which the ME/CFS community have endured for decades. And here is why I am on tender hooks. Current “management” for post-infectious illness is alarmingly constrained. I do not write accusatively. My intention is to be part of the solution and not part of the problem.

Who and what will ensure the proposed “Long Covid Clinics” are radically distinct from the “Chronic Fatigue Clinics” which have failed many post viral patients over the years? My agony breeds with perturbation. Should there be improvement in regard to what is offered to post-viral patients affected by Covid-19 will the people who have been left disabled by other types of viral infection before 2020 be included? If so, how? I want to protect, validate and guide those who will inevitably struggle with this diagnosis. The two communities, Long Covid and ME/CFS, must unite sooner rather than later, for there is strength in numbers.

https://www.jenniejacques.com/post/the-haunting-of-long-covid

 

[Kitty]

"Should there be improvement in regard to what is offered to post-viral patients affected by Covid-19 will the people who have been left disabled by other types of viral infection before 2020 be included?"

I do keep wondering quite what these clinics are supposed to offer, once they've established whether there is organ damage or other problems needing treatment/monitoring, and referred to specialists if so.

There's huge pressure to 'do something', but other than advice about pacing and adjusting, support with communicating their needs to friends, families and employers, and addressing any mental health issues, the best thing may be to help patients avoid doing things.

Except taking part in research if they're able, of course.

 

[chrisb]

But that would be to accept "therapeutic nihilism". Much better to do something even if it is not known to have beneficial effect. How else can expertise be professed?

 

[Trish]

I think you have described what the clinics should be doing, @Kitty. Rehab may be appropriate for those who have been in intensive care to get them back on their feet and active again, but for those with PVFS / ME symptoms, pacing advice and help with needed adjustments and communication with employers etc is all they can do.

 

[Kitty]

for those with PVFS / ME symptoms, pacing advice and help with needed adjustments and communication with employers etc is all they can do.

And teaching pacing and adjustment is a major task – despite what the deconditioning proponents believe, human beings are really not good at resting.

Even when a long-term patient has learned skills that help them retain as much function as possible and worked on finding things they enjoy, they still have to restructure their finances, reshape their social networks, and learn to deal with the inevitable negative attitudes they will encounter. That's a couple of years' work at least, and if it's done well, it can be hugely beneficial.

Unfortunately, I'm not optimistic...

 

[chrisb]

Even when a long-term patient has learned skills that help them retain as much function as possible and worked on finding things they enjoy, they still have to restructure their finances, reshape their social networks, and learn to deal with the inevitable negative attitudes they will encounter. That's a couple of years' work at least

More like a decade.

 

[Trish]

More like a decade.

Or a lifetime.

 

[Invisible Woman]

ME gets a fleeting mention when she says we have existing ways to treat brain fog and psychologists have a number of strategies and we have learned a lot from other postviral syndromes such as ME

Eh? What have we learned?

If we=patients and a handful of decent researchers who have struggles for a few crumbs of funding here and there, then a bit. Mainly what not to do.

If we= everyone else then "we" have learned nothing. What's more we are in denial over the level of ignorance. The ignorance is matched by the arrogance that it's okay to pretend expertise and harm other people.

 

[Esther12]

And they are providing part of the funding for DecodeME. Always best to look at the detail of each project rather than tar the entire process with a bad reputation due to a few decisions on funding that we don't agree with.

It would take a lot of work to closely examine all the NIHR's funding decisions, and from the look of some of them it seems that the NIHR can't be bother to do that themselves. Just from the problems though I think it's fair to say that this could be worse than nothing. I expect that funding Crawley will do more harm than DecodeME does good.

 

[Sly Saint]

I listened to this today; only one very brief mention of ME over half way thro (from longterm sufferer who'd contacted them).
One interesting thing from one of the people being interviewed was that she said she was improving and being more active, but was consequently finding she couldn't sleep.

 

[rvallee]

ME gets a fleeting mention when she says we have existing ways to treat brain fog and psychologists have a number of strategies and we have learned a lot from other postviral syndromes such as ME

Great example of how much BS goes through in medicine about chronic illness. Brain fog is not a recognized thing, has never been properly studied, as a consequence of which obviously we have no ways to treat it, no one's ever attempted it because it is simply dismissed as non-existent, no one takes it seriously. And medicine has learned exactly nothing in how to treat ME, in fact every damn thing that is being repeated about Long Covid came straight from the ME community, not medicine. All stuff that medicine, in fact, rejected as silly, the words, the framing, the caution, literally not a single bit of this came out of medicine, it actually rejected it whole as silly nonsense.

And this hack says we have ways to treat it? Even though anyone presenting with this symptom to a clinic will get a very blank stare of puzzlement and the need to reassure that there is, in fact, no fog currently in your brain you silly little anxious worried-well.

I assume this means anxiety and rousing reassurance or whatever but it's amazing how quickly the bullshit machine ramps up. Asking that question, say, 6 or 12 months ago, to that person and she would have had no clue what the question is about, would have asked to repeat what the questioner means by brain "fog".

As far as medicine is concerned, this simply did not exist until a few months ago and for the most part most physicians would dismiss it with annoyance as just anxiety, or whatever. But, sure, we have ways to treat it. Why not? Let's just make stuff up, what's the worst that can happen? After all, things are already maximally broken so it's not as if the worst can be made any worse.

 

[Kitty]

More like a decade.

Or a lifetime.

Yep! I meant time spent with regular support from a clinician, though, either to assist with gradual recovery (for those lucky enough to do so), or to adjust to a new long-term reality.

If we could get this kind of input at the beginning of the journey, just think how many mistakes we could cut out, how many shortcuts we could take. We could, potentially, stop people causing long-term damage to their health by exercising inappropriately or continuing to work when they really need to take a break from it.

 

[Andy]

It would take a lot of work to closely examine all the NIHR's funding decisions, and from the look of some of them it seems that the NIHR can't be bother to do that themselves.

Where do I suggest that you look at all NIHR's funding decisions?

I expect that funding Crawley will do more harm than DecodeME does good.

With respect, I think that is a ridiculous statement. If I turn it around, you are saying that your preference would be that DecodeME wasn't funded if it meant that Crawley wasn't funded either (not that the two things will ever be linked in that way).

 

[rvallee]

https://www.jenniejacques.com/post/the-haunting-of-long-covid

Seriously amazed that an actress (not to put down the profession, but experts are supposed to do better at this) actually legitimately understands this disease better than 99% of physicians and 100% of the people who are currently presented as the subject-matter experts, and it's not even close. Shows what a little empathy can do, that technical skills and rote memorization don't mean much if people simply don't care to understand the actual experience because it's not the way medicine works.

Really impressed by Jacques. Not just the efforts, she really understands what's important.

 

[Invisible Woman]

I expect that funding Crawley will do more harm than DecodeME does good.

As I liked this @Andy & I know you and others have put heart & soul along with blood sweat and tears to get this off the ground, I would like to explain why on my own behalf (not trying to put words in Esther12's mouth)

I am 100% behind DecodeME and believe that whatever it tells is will in some way increase our knowledge and under in the longer term.

In the meantime la Crawley sheds papers like a fluffy dog sheds hair. It's prolific and they get everywhere. It's not that Crawley's work is good, it's that it's blindly accepted and the volume of her work seems to trump the low quality.

So, for now, her work will continue to do more harm until we can tip the balance.

It's great that NIHR have funded DecodeME. It's a shame they keep also keep funding Crawley and so keeping the propaganda machine going because, let's face it, that's what much of her work amounts to.

Hopefully DecodeME will, eventually, help slow investment into such high volume & low quality output.