Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS
MrMagoo
Senior Member (Voting Rights)
Ach, pink was the new blonde a good few years ago. Pre-pandemic. It’s literally the least edgy of the non-natural colours.Just watching Professor Alice Roberts in Digging for Britain sporting pink hair
Chandelier
Senior Member (Voting Rights)
Interesting, they discuss whether it's ethical to run a study with Daratumumab when the etiology is unknown.
neophyte32
Senior Member (Voting Rights)
Oh my God… What a mistake it was to read the comments from some German doctors! Those who look down on us and dismiss us as depressed, crazy, or hysterical are getting an absolutely staggering number of upvotes. It’s genuinely frightening.
And to think I believed Germany was so much further ahead on these issues… When I see the attitudes of so many doctors, I’m honestly shocked.
Anyway, I need to stop reading this stuff before I make my PEM even worse, especially since I’m already going through a particularly severe crash right now.
Stay strong, my friends. We really, really have a long way to go…
Jonathan Edwards
Senior Member (Voting Rights)
I suspect tht in a strange way Germany tends to be both in front and behind in medicine, a bit like the UK but on different co-ordinates, while France toddles along in the middle with a slice of Brie or Tarte au Pommes. But this might be considered prejudiced.
neophyte32
Senior Member (Voting Rights)
I'm French, and I can assure you that the situation in France is pretty depressing.
Admittedly, our social welfare system remains relatively protective. When applications for disability benefits and official recognition of disability are approved, and you have good income protection insurance through your employer, it's still possible to maintain a certain degree of financial security.
But I fear that even this social safety net will eventually collapse. At this rate, after fifteen years of this peculiarly French version of "centre-left" politics embodied by Emmanuel Macron, there may not be much left of our welfare model.
As for medical care, however, I genuinely wonder how things could possibly be worse than they are in France.
Just imagine: as far as I know, we have only two genuine ME/CFS specialists in the entire country. Two!
And since you're involved in research, could you name a few French doctors who are currently conducting scientific research into myalgic encephalomyelitis? Seriously, it's a desert.
To give you an idea of where things stand, Professor Authier, based in Créteil, claims that ME/CFS can be detected through PET scans by identifying areas of reduced brain metabolism. This idea has become so widespread that part of the French patient community now seems to regard this method as a validated diagnostic tool.
That's where we are in France. And frankly, it's utterly disheartening.
The most notable themes in the discussion are that 1) the physicians are hiding behind psychosomatic models, confident that it frees them of any responsibility whatsoever, to the point where they never consider the possibility of it being wrong, because they don't have to, 2) they have wildly inflated, and mostly false, notions of the efficacy of those treatments, which is normal since that fraudulent over-confidence comes from the ideologues and it's over-hyped precisely for that purpose, and 3) most of the informed comments appear to be from patients.
I noticed one good comment from a physician with ME/CFS that is pretty good, and of course is entirely ignored. It's usually the case but it's impressive how it exactly mirrors the conspiracy fantasy communities and their ability to completely overlook any and all conflicting information. And they accuse us of being in an echo chamber with powerful lobbies. Beyond parody.
There are a few odd comments how it's possible that a few of us might be psychosomatic, and that seems to satisfy the idea of sacrificing everyone because no one understands that doing nothing is the reckless position and should be just as actionable as neglecting/forgetting someone in a coma.
I still think that the best play we have is to make professionals and their institutions understand that this protection is invalid, that they are clearly using it as plot armor and never think about the possibility of it being wrong. No one seems to understand that it's not possible to be neutral here, and every excuse they use to justify it makes more sense as contradictory evidence, such as pointing out that we object to this model and its consequences, which is exactly expected in a situation where it's true, but they keep using it as evidence of the contrary. Which is simply bizarre, but not unique to medical professionals.
The institutions need to understand that there are giant liabilities at play here, how no one on the wrong side of the fence will look good or have any actual defence. They never, ever think about this. The best exercise we could do is get some people in a position of influence over this thinking, and talking, about the possibility of being wrong, of what it would look like (exactly the way it looks now), and what it would all mean.
So, exactly nothing learned and everyone is hiding from liability behind mommy's skirt. It's actually the rare example where using "just following orders" as an excuse would be better, because the current excuses are 100x more pathetic. Hell, in many cases it's like the leaders of the system arguing the same despite having no bosses.
Well, it’s quite upsetting to see such comments from supposedly doctors. But we simply don’t know if they are qualified enough to discuss such a topic in the first place. Not many hours are dedicated to immunology in the curriculum of medical universities (at least in my country of origin). Zero hours are dedicated to ME/CFS itself. Not many doctors could tell the difference between high quality research papers and bad ones. Some of the comments give me an impression that not all the specialists understand that smaller drug trials are usually exploratory in the first place and shed light on pathogenesis of diseases.
Just more proof, if any more were needed, that doctors don't usually make good scientists. Different skill set and mind set.
Problem is that they think they do, that because they are practicing a science based profession, therefore they are scientists. But they are no more scientists than I was when I was an electronics tech.
Doctors in the clinic are mostly high class technicians, not scientists. Nothing wrong with that. An honourable and important job. But is it not being a scientist.
Problem is that they think they do, that because they are practicing a science based profession, therefore they are scientists. But they are no more scientists than I was when I was an electronics tech.
Doctors in the clinic are mostly high class technicians, not scientists. Nothing wrong with that. An honourable and important job. But is it not being a scientist.
MrMagoo
Senior Member (Voting Rights)
Yeah good luck convincing a medical doctor that they're not the most knowledgeable person ever. I’d rather have a debate with a lawyer who doesn’t like me.
rainy
Senior Member (Voting Rights)
People push the psychosomatic model because they think it absolves them of responsibility, when it’s actually the model that should make the biggest demands of their behaviour. Because it's a theory where how you treat people, how you make them feel, can make them sick and disabled, isn't it?
I notice a lot of families do this too. Because it’s psychosomatic, they dont need to be kind or supportive. The sick person is just a special kind of sensitive and stressed, so it justifies neglecting them.
If they actually had to follow through on their theory, and they had to be supportive and kind, they would jump ship immediately, and stress etc wouldn’t be that important after all.
I expect most promoters of the psychosomatic model absolutely believe it's an accurate intepretation of reality and moreover that they are helping people and doing good. I think a lot of the bad attitudes we see (treating us as lazy, malingering etc) are about othering - we are not like them. We are an inferior, less deserving, or weak subset of the population to be pitied or judged, and managed for our own good and for the good of the community.
There are of course a few, especially among the most publicly outspoken and who have made lucrative careers out of treating us this way, who know perfectly well that they are wrong but their own comfort and status come first.
There are of course a few, especially among the most publicly outspoken and who have made lucrative careers out of treating us this way, who know perfectly well that they are wrong but their own comfort and status come first.
Chandelier
Senior Member (Voting Rights)
Some great comments there, interesting to read. But, the Bateman Horne Clinical Care guide has been given lots of mentions - and it has quite a lot of problems.
There's a thread on it here, linking through to other resources such as an ME/CFS Science Blog.
There's a thread on it here, linking through to other resources such as an ME/CFS Science Blog.
V.R.T.
Senior Member (Voting Rights)
That's really unethical! They haven't attempted to address any of the criticisms of their work and prove them wrong yet!
And they say they focus on cutting edge treatments like vagus nerve stimulation and cryotherapy.
This is one of the people who's been funded to design a platform trial for MECFS. I hope they don't put him in charge of choosing the interventions...
Jonathan Edwards
Senior Member (Voting Rights)
This is why we need Chris Ponting's call for more disagreement to become a reality.