ME as a physiological d general question

[Seven7]

I have a question,

We have (19?) which ever the numbers of doctors listed as main writers of PACE and one paper, Vs 2k+ papers on the physiological abnormalities of CFS/ME. And at least I can list 50+ specialist doctors (going by the signatures against the IOM) but if we add the ones that did not sign we should go up to 100+
that treat cfs with its all physiological abnormalities.

How in such a proportionate number is the view still psychological, what does it take to switch? If I had a blog I would investigate this question. I would love for one of the very good writers to tackle this question. I know is not an easy answer but how do we change the perception in the medical community. What will it take. Like we need a gap analysis so we can move forward.

 

[Aurator]

how do we change the perception in the medical community. What will it take.

Hard biological evidence that leaves no place for a psychological explanation.

 

[A.B.]

Belief in psychosomatic illness is one of the superstitions of our time. I cannot see any scientific or logical arguments in favor of it. This approach hasn't yielded any useful results either.

So why is it popular? Offering a psychosomatic explanation might be a mechanism for people to isolate themselves from tragedy and other unpleasant factors.
"No, there aren't 17 million people suffering from a disease we know almost nothing about."
"No, this isn't going to happen to me because I don't have these character flaws."
"No, sufferers are not being discriminated again. They just need some tough love to snap out of it."
"No, they are not really sick. They just haven't learned to make an effort and take responsibility for their health."
"No, I'm a competent doctor, these people just don't have a disease."

I also think this belief is used by those who would rather not pay the expenses that would come with accepting the illness as having a biological basis.

That said I doubt that attacking from this angle is going to do any good.

What we can do is point out how there is realistic hope, there is a clear path to follow that will yield real results, that there are compelling reasons to search for real solutions.

Investing in ME/CFS research will ultimately benefit society as a whole. All the sick patients could be contributing to society if there only was a decent treatment. Research transformed AIDS from a death sentence into a managable disease. We haven't found the solution for ME/CFS yet because there simply hasn't been a serious research effort.

 

[worldbackwards]

I have a question,

We have (19?) which ever the numbers of doctors listed as main writers of PACE and one paper, Vs 2k+ papers on the physiological abnormalities of CFS/ME. And at least I can list 50+ specialist doctors (going by the signatures against the IOM) but if we add the ones that did not sign we should go up to 100+
that treat cfs with its all physiological abnormalities.

How in such a proportionate number is the view still psychological, what does it take to switch? If I had a blog I would investigate this question. I would love for one of the very good writers to tackle this question. I know is not an easy answer but how do we change the perception in the medical community. What will it take. Like we need a gap analysis so we can move forward.

It's about political power. It doesn't matter how many specialists believe whatever (though I've no idea about how they stack up), it's about who controls the narrative - how many doctors on the ground know who they are and would listen to a word they say? Sir Simon Wessely is head of the Royal College, The Lancet and BMJ are what they are - they are the UK medical establishment. They say things and get heard. If they say CFS is characterised by fear avoidance and cured by GET, that is what is heard.

What would make the difference? The only way to win is on the science and, I suspect, even that wouldn't matter in the UK. PACE ended with a null result, which was claimed as a triumph as the CBT and GET groups responded more quickly, a kind of scientific version of the away goals rule (I suspect this simile may be lost on Inester ). Basically, if we win by a short head, we still get annihilated - unless there is an unambiguously terrible result for CBT/GET, a way will be found to spin it into a success that can be reported upon and used to drown out reality.

The hope is America, in my opinion. This is to an degree regardless of what money the NIH does or doesn't spend (although that is obviously important) and more to do with the attitude that the IOM report and the coverage coming out the the NIH change of heart engender, as well as the widespread reporting of David Tuller's articles - it does feel like finally the US is letting go of the psychiatric point of view at the institutional level. As such, the research that gets taken seriously will hopefully increasingly be the stuff of genuine importance, which will generate further interest from medics in the useful end of the spectrum.

It isn't that the psychiatric research is any good - it has never proved the case for its hypothesis or its treatments - it's just that it dominates the narrative. If that dominance has broken down in the US, we have an arena where the breakthrough would actually be heard if it were made. Au contraire, were it to happen in the UK, it would be shouted down, covered with scorn and sent back to where it came from very quickly. This is why I have increasingly little faith that anything will come out of the CMRC - if it ever looked like someone was getting anywhere you'd quickly see where the power lies.

So, yes, unambiguous science, but also an environment where it can be taken seriously, which increasingly it looks like the States might be becoming.

I hope.

I'd like to think.

That's my twopennoth anyway.

 

[minkeygirl]

@worldbackwards last year I saw an immunologist (allergist) because I have a confirmed immune deficiency and needed ivig. He knew I have ME.

He would not treat me until I had a psych eval to make sure my symptoms were real. This guys notes on me were pure fiction. He manipulated things I said to fit his way of thinking despite my lab results. I told my Pcp that I could be batsh*t crazy and that wouldn't alter the fact that I have an immune deficiency.

We're still struggling here. Don't count on us to make this right. This is my opinion based on my experience.

 

[worldbackwards]

We're still struggling here. Don't count on us to make this right. This is my opinion based on my experience.

I'm not saying that we're there yet and obviously opinions take a long time to change - I imagine that, even were this all nailed down and we knew exactly what was wrong with us, there would still be plenty of doctors who would still be convinced that they'd been right all along anyway.

What I meant is that, in my opinion, the US is at least institutionally starting to evolve along the right lines, that some of the right people are looking at this with a good attitude, whereas the UK is perfectly satisfied with the know-nothing, care-less current situation. I think there are foundations for hope in the future. I didn't mean that the US is an ME utopia where everything is OK forever. I absolutely understand that it's still grim on the ground for a lot of people.

 

[duncan]

I think in the end we will need to either legislate or litigate change. Science will be part of the process, but the venue won't be one of Science.

 

[Skippa]

In summary: power, respect and political standing of the few "scientists" trumps all the fancy pancy actual evidence of the many.

 

[Valentijn]

How in such a proportionate number is the view still psychological, what does it take to switch?

We have to get rid of vested sources of propaganda. For example, the Science Media Centre is a lobbying group in England which works very hard to promote both the psychogenic theories of ME/CFS, and the narrative of ME patients as bigoted anti-psychiatry extremists who harass researchers.

 

[Seven7]

We have to get rid of vested sources of propaganda

I guess that is what I intended like the hard to task list to move forward and identify this entities and dig. Take advantage of Coyne interets and point out the trail. If we follow the money maybe we can find the real issue.

 

[sarah darwins]

If we follow the money maybe we can find the real issue.

I think that's the one thing that might get journalists to wake up.

 

[alex3619]

We have to get rid of vested sources of propaganda. For example, the Science Media Centre is a lobbying group in England which works very hard to promote both the psychogenic theories of ME/CFS, and the narrative of ME patients as bigoted anti-psychiatry extremists who harass researchers.

This is almost impossible to do, though its worth trying if an opportunity presents itself. What we can do is create our own media outlet, a one stop place for journalists to visit. It should be global I think.

 

[alex3619]

If we follow the money maybe we can find the real issue.

Following the money only works if there is in-depth investigation. We typically don't do that. Who have we interviewed? Who is doing the legwork? We need a whistleblower or a detailed paper trail to make this stick. We might benefit from a thread on possible methods to do this and similar advocacy.

There are some of us doing this via online documentation. Its not easy, it takes oodles of time, and the typical result is only suggestive. Its also easy to paint as conspiracy theory.

My own view is that describing funding etc. as inducement to bias, not outright corruption, is a better way to go. Money can bias science, governments, and so on. Unless of course we get a whistleblower.

 

[Hip]

What we can do is create our own media outlet, a one stop place for journalists to visit. It should be global I think.

That is a great idea.