Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

[Trish]

Have often thought about that. I just can't imagine how much worse this whole thing would have been without the internet & without being able to access support & insight from other patients.

I got sick in 1989. I was diagnosed by a GP. She had no advice for me, and other GP's just said try to exercise more, and signed me off sick for a week or two when I was struggling with part time work. I was most helped by a couple of books that gave good advice on pacing and got the MEA magazine which had some decent articles by Charles Shepherd. I wasted money on alternative therapies but at least there were no clinics pushing GET.

About 10 years later my daughter went to a course of group OT sessions at the local clinic. They did diary keeping, find your baseline, pacing up. She found it a complete waste of time.

 

[rvallee]

Perversely, in some ways that may have actually been a modest positive, as we had to largely figure it out for ourselves, without the BPS club breathing down our neck.

I do think it's fair to say that things have regressed significantly since the days Wessely decided to target us. Things looked really bad back then, but they still look far worse today under the dominance of the biopsychosocial ideology, because it's an extremist ideology that always doubles down on its mistakes and has no ability to stop destroying lives. It's similar to how a state of anarchy can be preferable to a blood-thirsty tyrant. The tyrant does not let go of its power, whereas anarchy is a vacuum begging to be filled. Sadly it got filled with all the wrong ideas.

But at least as things got worse on the clinical and professional front, the community is much more useful than ever. And the modern world makes a lot of things easier. So things at home are slightly better, despite the worst efforts medicine put out, because of technological progress.

And that's even accounting for Long Covid. The needle has not swung back at all. It's getting jiggled in the right direction, but there is far more pull in the wrong direction and it probably made us worse overall. Until science does what it does and provide real answers. Which is basically like waiting for a sword-in-a-pond moment. How little things change, even when everything does. Humans are so freaking weird.

 

[MrMagoo]

One reason might be they're not getting a diagnosis. When I wasn't recovering from Covid and showing signs of (what I now know to be) ME/CFS, my Dr didn't give me a label. So I hadn't the slightest idea where to look for information*. She was perplexed and told me to increase exercise. Also I was in the fortunate position of having worked with Drs before and had relatives who had experienced medical misadventure, so I didn't have them on a pedestal as a profession.

I was struggling just feeding myself and doing daily activities, while barely managing to get through my job and holding on by my fingernails & her advice was to increase activities?! It was so obviously ludicrous advice combined with her psychologising / dismissing me, that I didn't take her seriously for 1 minute (while of course pretending to take her seriously because of the risks of not being a 'model' patient).

She should have advised me I was way too unwell to be trying to work and needed time off work. The option of just stopping work hadn't crossed my mind for obvious reasons and I was going to a Dr trying to get to the bottom of it so I could work and continue with my life... instead shocked to find all this gaslighting right at my most vulnerable moment. Her dismissal made me feel briefly suicidal. I was so incredibly ill and the one medical person you are supposed to go to for support was fobbing me off.

Luckily I unexpectedly happened to see another Dr who immediately said I was too unwell to be in work & signed me off. The illness got worse over time, I believe it was unfolding, new neurological symptoms began, there were episodes where I believe I came close to death. Would that have happened if I'd stopped work sooner, known about pacing?? I don't know but I suspect not. My sense is that an unfolding disease process was at play. But I am certain if I'd followed the Drs advice re exercise, I might not be around now, or very severely ill. I've no doubt about that.

*Will forever be extremely grateful for all the pwME back in 2020 who started sharing their experiences online with LC patients & advised re pacing / resting etc. as well as explaining the medical context.

Thank you. I was trying to share info back then and quite a few times it was not well received and I was told to pipe down! It was strange to see it play out. The rush to be vegan, take antihistamines, keto diets, supplements…people declaring it had made such a difference, a few weeks later feeling worse, then admitting it didn’t really help and they had ditched it.