George Monbiot on ME/CFS, PACE, BPS and Long Covid

DokaGirl said:
If writing about something caused more of it to happen, then why do we still have ME? Surely the huge number of pro BPS articles on this disease, and how to fix it would have caused it to be eradicated it by now.
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Yup. It's been maligned and mocked for decades, doctors openly insult us because it's seen as OK and good, one of the last acceptable bigotries. And yet the numbers keep rising, as best as we can tell. Which may be incorrect, if only we had better research to tell otherwise. Nevertheless, still very present in numbers that completely invalidate the cultural illness thing.

Also on the same effect with Long Covid, deniers are massively exaggerating the extent of coverage. Ask random people and guaranteed that less than 5% had even heard of it, or at least through news media. And of course it basically violates the linear passage of time for those who got it in the first few months, when only we were talking about it.

Only shows that facts have been entirely irrelevant in the systemic denial of chronic illness. It's just people shouting their opinions and the system completely failing in its obligations in response.
 
DokaGirl said:
If writing about something caused more of it to happen, then why do we still have ME? Surely the huge number of pro BPS articles on this disease, and how to fix it would have caused it to be eradicated it by now.
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Surely the situation is much worse. If writing about illness causes it then all the papers by liaison psychiatrists and their trials and grant applications and press releases must have been the cause of ME. They must have invented and caused the disease. Not that they did but that would be their hypothesis.

Jobs for the boys and girls.
 
Jonathan Edwards said:
Surely the situation is much worse. If writing about illness causes it then all the papers by liaison psychiatrists and their trials and grant applications and press releases must have been the cause of ME. They must have invented and caused the disease. Not that they did but that would be their hypothesis.
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But they do the responsible thing of putting a positive spin on their results. For the good of patients.
 
It's very odd. I can't imagine any of these BPS guys coming out claiming depression is perpetuated by articles written about depression or by depression support groups. With regards to psychiatric conditions they seem perfectly content with stating more awareness is better and important. Since they think ME/CFS has a significant psychological component, wouldn't it be consistent for them to treat it with the same severity as depression? This twisted logic of awareness making an illness worse only works for poorly understood conditions apparently.
 
JES said:
It's very odd. I can't imagine any of these BPS guys coming out claiming depression is perpetuated by articles written about depression or by depression support groups. With regards to psychiatric conditions they seem perfectly content with stating more awareness is better and important. Since they think ME/CFS has a significant psychological component, wouldn't it be consistent for them to treat it with the same severity as depression? This twisted logic of awareness making an illness worse only works for poorly understood conditions apparently.
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Something about "protesting too much" comes to mind. If there is a shred of credible evidence that ME is physical, then opponents feel compelled to fight back, with whatever means available...

Although, there is evidence that depression has physical causes. Not an expert in this, and don't know where this stands. But it's awful to be blamed for being depressed when it's a chemical imbalance, let's say.

Would be interesting to read how physical diseases, such as asthma, previously labeled psychosomatic, came to be accepted as physical. I know about breathing tests, charts etc.
But how were unscientific arguments overcome? The powers that be gave up on rejecting asthma as a psychological disease? They decided they couldn't win that one? Moved on?
Something about "don't confuse me with the facts" also comes to mind.
 
Wyva said:
So I haven't read the posts on this forum/in this thread about the Monbiot article yet, only the article itself (and I'm going to read them later). But I just wanted to share that it's such an unbelievable story that in the past couple of hours I had been working on a summary of it in Hungarian - actually I also had to give a lot of background information on the situation and story of ME/CFS and the Wessely school in the UK and how their dominance affected even how other countries viewed the disease (Hungary too, although here mostly ME/CFS is simply just not talked about at all, as opposed to being some sort of battleground). The explanation (with proper links/references included) was so long that my article ended up much longer than Monbiot's, although it was supposed to be a shorter summary. :laugh:

This forum with its collection of links is so very useful in this respect and following threads here gives me really valuable insight to what to expect/how to prepare for what might lie ahead here too. So it's great that now I have this article that covers the Wessely school, the PACE trial and the above story with Sharpe and Monbiot just illustrates the situation wonderfully. Now I'll just pull it out anytime someone psychologizes long covid, it is so ridiculous.

And now I'll go and have the worst PEM of my life. :p
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You're in the European Union so bear in mind there's been some lobbying there too e.g. check out this facebook group and tis website
#MEAction European Union (EU)

https://europeanmecoalition.com/
 
JES said:
It's very odd. I can't imagine any of these BPS guys coming out claiming depression is perpetuated by articles written about depression or by depression support groups. With regards to psychiatric conditions they seem perfectly content with stating more awareness is better and important. Since they think ME/CFS has a significant psychological component, wouldn't it be consistent for them to treat it with the same severity as depression? This twisted logic of awareness making an illness worse only works for poorly understood conditions apparently.
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I think it has been mentioned here previously that Wessely has talked about the dangers of too much awareness (I think in the context of overdiagnosing life events as depression)?
 
Frederick Woolf, MD basically said the same thing about fibromyalgia diagnosis, that it created more problems giving patients a diagnostic label than keeping them in the dark.

He is still at it, denial denial denial, sociological drivel.
 
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Sly Saint said:
well if we're going to start gloating; the Swiss re presentation (in February) wasn't picked up by anyone until I posted it here:
https://www.s4me.info/threads/swiss-re-expert-forum-on-secondary-covid-19-impacts-feb-2021.19910/
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Yes, that was a great spot. Thank you. It also makes me wonder what other talks by BPS enthusiasts there might be out there that we’ve missed. The great thing about all these talks being online at the moment is that they can be easily accessed, recorded and shared. If only we had recordings of all the private talks over the past 30 years by SSW & Co.
 
Wow I went and read some of the comments underneath the guardian article and now feel really sad. Why are people like this? Why do they feel the need to say that there’s a psychological dimension to everything, it’s never going to be one or the other - I am seeing nocebo and placebo and healthy anxiety or conversion disorder mentioned? I didn’t realise so much of the population believed in this BPS stuff so wholeheartedly? And many of them are using the fact that Sharpe is a prof at Oxford while George Monbiot is not, to discredit further. :/

Edit: and there’s some people with ME on there saying positive thinking helped them. Sigh.

Edit 2: many of them are also missing the actual point of the article, about the trial and the flawed data that was withheld.
 
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lunarainbows said:
Wow I went and read some of the comments underneath the guardian article and now feel really sad. Why are people like this? Why do they feel the need to say that there’s a psychological dimension to everything, it’s never going to be one or the other - I am seeing nocebo and placebo and healthy anxiety or conversion disorder mentioned? I didn’t realise so much of the population believed in this BPS stuff so wholeheartedly? And many of them are using the fact that Sharpe is a prof at Oxford while George Monbiot is not, to discredit further. :/

Edit: and there’s some people with ME on there saying positive thinking helped them. Sigh.

Edit 2: many of them are also missing the actual point of the article, about the trial and the flawed data that was withheld.
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It's interesting how this stuff about positive thinking curing or helping people isn't as prevalant in discussions about actual psychiatric conditions - because people with those conditions would find it offensive and patronising and unscientific. But with ME it's okay.

It's just so normalized to not take ME seriously and dismiss the people with it. Not an easy thing to fix
 
rvallee said:
Yup. It's been maligned and mocked for decades, doctors openly insult us because it's seen as OK and good, one of the last acceptable bigotries.
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I don't think it is a stretch to say that we are one of the more despised and abused minorities on the planet.
Sasha said:
A friend of mine just sent me a link to the article knowing I'd be interested, and said that a friend of hers diagnosed with ME/CFS post-Covid has been prescribed GET.

How can we stop this unfolding disaster for post-Covid patients?
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Sadly, I think it is going to take some damage being done before the voice of protest from LC patients will be loud enough. :(
 
Who's going to be the one to tell U.S. NIAID Director Dr. Anthony Fauci that he's a super-spreader of long Covid ?
You don't want to be scaring people and alarming them, but they really should know that we don't know what the long-term consequences are, even when it looks like a routine infection. We better be careful. Even after you clear the virus, there are postviral symptoms. I know, because I follow on the phone a lot of people who call me up and talk about their course. And it's extraordinary how many people have a postviral syndrome that's very strikingly similar to myalgic encephalomyelitis/chronic fatigue syndrome.

They just don't get back to normal energy or normal feeling of good health.
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Medscape Interview 7/17/20
 
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