UK: Healthsense, formerly called Healthwatch

This post has been copied and some posts moved from:
Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

I’m not sure if this is the right thread to post this but David Colquhoun has commented on PACE etc again:

David Colquhoun: “Not many people think that the PACE trial was conclusive. But that is not, I think, sufficient reason to refer to "the abuse of people with ME by the medical establishment". The fact is that nobody has any idea what causes ME/CFS and nobody knows how to ameliorate it.”

“It is reprehensible that some people don't admit that this is the case. Excessive hype about cures that don't work leads to disappointed patients resorting to quacks, who have no compunction about making excessive claims.”

 

David seems to have missed the point that the abuse of people with ME/CFS by the medical establishment goes way beyond people not admitting they don't know how to ameliorate ME/CFS. There was of course direct verbal abuse of the patient community in lectures given by White, Sharpe, and others and spreading smears throughout the media.

And it wassn't the hype about cures sending people to quacks that was the problem. The quacks were already there. The problem was making people worse and misrepresenting evidence for personal gain.

It is a pity that Colquhoun seems happy to team up with the HealthWatch lot. As Caroline says they were the opposite of helpful relating to ME/CFS. Nick Ross was sympathetic but the medics on HealthWatch are a very motley crowd, including dyed in the wool BPS members.

 

Not lately he wasn't

I posted Chris Ponting's article in The Conversation https://theconversation.com/ignored...he-origins-of-a-modern-medical-scandal-241149
I highlighted that Ponting was of the opinion, as am I, that the "chief cause [of apathy/lack of research] is misogyny, an ingrained prejudice born of the disease’s strong female bias"

His response was this (my bolding).

Oct 21, 2024, 12:37:14 PM

to healthw...@googlegroups.com

Undoubtedly there’s truth in what he says and good reason for his frustration- but I find this article frustrating.

He complains there are no hospital beds for ME - yet he concedes we have no cure, so what will hospital bed provision achieve? He fails to address that this seems (I stress that word ‘seems’) to be a relatively newly-widespread phenomenon, which, if true, would suggest genetics play only a minor role. He offers no evidence of whether this is a global problem or, as some suspect, essentially a first-world one. Indeed he cites no familial background of ME symptoms to support the inheritance theory.

All in all there seems more heat than light. Am I being unfair?

Nick

I replied
[Ponting is]...running the first ever large-scale genetic study of ME which took a very long time to get funded, so I'm not sure how he's supposed to cite evidence for the inheritance theory. Maybe I am misunderstanding your point. All previous large-scale research has been built on the theory that ME is largely caused and/or perpetuated by social and psychological factors. If these factors are the only factors so far investigated in the first world, it doesn't mean it's a first-world problem.

The focus on the social/psychological factors has led to the infamous and debunked PACE trial, the Lightning Process study etc. designed to give the answers that governments and insurers wanting cheap "solutions" would welcome. They are obviously reluctant to let go of these solutions, as even if they don't work or cause harm, there's no alternative yet. Patient non-compliance with these solutions is often used to justify withdrawing care and support, and to accuse patients of being difficult, or worse.

No one has ever investigated whether severe ME patients unable to swallow could have a PEG-J and remain at home to avoid them being hospitalized when, as you say, there's no provision for ME patients anyway. This was not even explored in Maeve's case despite it being used in the States for Whitney Dafoe for 8 years. https://www.whitneydafoe.com/mecfs/...l-of-suffering-honoring-maeve-boothby-o-neill.

 

That seems to me to be the key sentence, and in my experience reflects Nick's humility. His arguments are not very well-informed but I have to admit to thinking that Chris also had some pretty weak arguments.

I don't think prejudice against ME/CFS has much to do with misogyny to be honest. Men get ridiculed just as much if not more. Rheumatoid and breast cancer are women's diseases and have had massive research effort and sympathy. In contrast prostate cancer is played down to the extent that large numbers of men die unnecessarily, having been fobbed off despite positive tests.

 

PACE is just one plank of that abuse, the only framing in which saying this is accurate, but it sure is massive systemic abuse. Lying about millions of people always leads to abuse, this is not hard to understand.

And it's simply false that nobody has any idea how to ameliorate it. We do. We have shown the way, it has been rejected, in favor of delusional fantasies like PACE. Even though, as we see through LC, the very same ideas are always where things end up when they account for reality. And it consists mainly of ending a malicious model based on lies and accepting reality for what it is, not some fantasy model version of it.

This is easy. Everyone can easily get in on this. Technically speaking. Culturally and egoistically is a whole different issue, and that is how the abuse has become systemic. But to say that no one knows is simply false, it's that the people who do know better and the people making the decisions have a complete power imbalance going on and zero overlap in perspective or attachment to facts. We are never in the room when they make decisions about us, in secret behind closed doors. And they never take our actual life experience into account, just what tiny little bit of it they actually know.

The people responsible for this disaster have agency. They use that agency to maintain their supremacy, just as ruthlessly and intentionally as any dictator or warlord. At its core it's the same dynamics going on. War isn't the only way the ugliness of human nature manifests itself. But of course, well, I will let a cartoon do the talking because this is an issue that even children can understand so clearly the arguments have to be at that level if they are to reach people.

 

Wow.

Or it could be the case that (as for me) the trigger or exacerbating event would have killed me in previous eras. Or indeed in countries with less developed healthcare systems.
Or that we weren’t looking before. Or we bundled people into another category.
There are many diseases we see more of now because we treat other diseases. But they don’t get put into this category do they?

There may be some valid criticisms of the article but yes, Nick is being unfair in his comments. Not about the article but about in his description of ME as seeming to be a first world problem. And I find his attitude frustrating.

Just to add that @Jonathan Edwards makes what I think are reasonable criticisms of the article. Agree with them or not, they are reasonable criticisms. I see this as a stark contrast to Nick’s which seem ill informed and perpetuating very unhelpful assumptions.

 

Also while we may not know how to ameliorate it, we very much now how to make it worse. And they insist on not listening when we tell them that.

 

Yes, we used to know a chap with ME/CFS back in the 1980s, and he faced just the same prejudices as my wife subsequently did.

 

Yes, presuming ME/CFS sufferers to be undeserving of care or understanding, and acting towards them on that basis of that belief, ends up being abusive because of the unnecessary suffering it causes. First cause no harm just goes out of the window.

 

But they are not blamed on anxiety. What about endometriosis? MS, another female dominated disease. I think misogyny plays a part in these conditions not being investigated or diagnosed quickly enough or at all. despite women seeking healthcare. In the case of prostate cancer, I didn't realise men are fobbed off despite positive tests - that's awful.

 

– He doesn’t seem to understand the purpose of DecodeME. As the DecodeME website says “It is clear that there is no ‘ME/CFS gene’, or even a handful of such genes. Instead, each person with a genetic predisposition to ME/CFS will have many DNA changes – both rare and common – that have tipped the balance in favour of disease over health.”

– I’m not sure what he infers from his assumption that ME/CFS is a “relatively newly-widespread phenomenon”. Covid-19 is new. HIV is relatively new. Cancer is old. It would be interesting to know if ME/CFS is a relatively new illness or whether it was previously hidden but I’m not sure how that relates to his views, and it is irrelevant to arguments about the quality and quality of service provision and research.

– Again, it would be interesting to know the prevalence of ME/CFS relative to GDP per capita in different countries but it’s not relevant to determining whether BPS theories are correct (which seems – and I stress “seems” – be be what he is implying). Osteoporosis, asthma, Alzheimer’s, type 2 diabetes and cardiovascular disease are all more prevalent in richer countries. Malaria, cholera, rickets and schistosomiasis are more common in poorer countries. What is Nick’s point?

“All in all there seems more heat than light. Am I being unfair?”

I’m confused. Is he suggesting that because we don’t understand much about ME/CFS we should ignore the suffering of patients and all the problems with services and research?

All in all his comments seem to betray a lack of knowledge or understanding of the issues, which is a pity. I hope he may be open to learning more.

 

It feels like emperor's new clothes that a bad treatment approach has been used for years - that included in guidelines suggestions of not investigating for anything else (and basically describing hypochondria) - for someone to straw man that 'this seems to be a relatively newly-widespread phenomenon' when harmful management on a systemic scale is likely a big reason for some becoming so severe, on such a scale.

and erm social media / silencing and name-calling or indeed labelling as 'mentally ill' was the inference in the actual guideline until the end of 2021 - so previously (and still) how many got 'disappeared' under that?. But yeah, first world problems cowardly hidden under pretending he isn't saying that - the fact he didn't check these details before he trotted it off tells me he is happy to assume that based on him believing (it's first world) alone.

Ironic that he's used the term 'more heat than light' to sign off. Which is often used in a veiled way for another meaning.
Then followed that phrase with 'am I being unfair?' emotive man-not-ball(instead of 'is what I've just guessed at incorrect?') so it's rhetorical too.

which whilst he might think people will read that as about something else, as a reply to a woman / a topic saying there might be a culture of inadvertent misogyny behind people being harmed (that people are unaware of affecting their opinions) I'd say this was a riskily ambiguous term to use in rebutting that existing ... nevermind finish on

 

Endometriosis is female by definition so we cannot judge. But 'irritable bowel syndrome' is pretty similar and abdominal pain is dismissed as 'functional' just as much in men as in women, if not more so. I had 'functional bowel disease' on my records until I asked to have it removed. Putting early MS down to anxiety occurs in men as well as women.

I was told my PSA result did not warrant an MRI but I told my GP that I had already arranged the MRI with a colleague at UCH so he gave in. It showed an invasive tumour that turned out to be within a millimetre or two of spreading to an extent of being inoperable. It was removed and I have had no evidence of tumour since. A member of my family was not so lucky and died miserably.

I actually think that part of the difference is that men are less likely to go to a doctor and they keep quiet about diagnoses because being ill is not considered masculine. And after all, they consistently die younger! Nobody much is likely to sympathise with a man whose doctor thinks he is a wimp. Political activism about ME/CFS being a women's disease was presumably responsible for it being re-assigned to 'Women's Health' under the NIH in the USA. And that led on to it being dumped into the 'Integrative and Complementary Medicine' sector run by Brian Walitt because 'obviously' things only had to be put in women's health if they were not real.

 

Nick is not medical and admits the limits of his knowledge if you converse with him by email. He seems to have picked up some wrong ideas - not surprisingly since HealthWatch is full of them - but in the past when I have pointed out things to him he has appreciated being better informed.

 

I eas confused (easily done!) By reference to HealthWatch .....
Just for clarity and simple souls like me...

Nick Ross' HW, appears to be called Health-Sense, ...... after the creation of 'Healthwatch' in 2012 roll out.
So no association with current HW!

 

Presumably there might also be environmental factors (in the broadest sense) that might interact with, or precipitate, some of these DNA changes?

 

..... 'Originally named the Campaign against Health Fraud, it was changed to HealthWatch at our second AGM, held on 12 July 1990, and registered as a charity. It went on to be renamed HealthSense in 2022, in response to confusion resulting from the government's newer initiative "Healthwatch England".'

Hum Michael O'Donnell and Caroline Richmond involved......

 

• Lord Dick Taverne....... Oh no!

Committee members and trustees

 

Nearly always, but men can also get it.