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

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.

 

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.

 

https://twitter.com/user/status/1382396607358963712


Akrami is the lead author of the Body Politic patient-led research and a neuroscientist.

 

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.

 

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?

 

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.

 

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.

 

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/

 

https://twitter.com/user/status/1382409650000236550

 

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.

 

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.

 

Really? Can't you? Are you sure?
Simon Wessely: “Every time we have a mental health awareness week my spirits sink” https://www.bmj.com/content/358/bmj.j4305

 

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.

 

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

 

Michael sharpe has tweeted out his old “ME and the perils of internet activism” guardian article.

 

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 ?

Medscape Interview 7/17/20

 

I agree. We're the modern day equivalent of lepers.