Search results

Spot on. I think the ethos of western can-do individualism plays a role here. Anything bad that comes your way is probably your fault because you didn't take care of your health. You can achieve anything as long as you pull yourself up by the bootstraps. You can be anything you want! (Anything...

Yeah, this makes no sense. Recruiting sick and healthy participants for studies which are of no direct benefit to them is hard but not impossible. I’ve done it as have millions of other scientists despite not being allowed to offer financial incentives where I am. I find it very hard to believe...

There is a cult of exercise in our society. People have been led to believe it has magical healing properties. One of the reasons ME/CFS is heavily stigmatised is because we tell doctors and ppl in general that exercise makes us worse.

In online communication I use the compromise term ME/CFS to acknowledge the uncertainty and politics surrounding the name but also because I believe that ME and CFS are the same illness. I don't accept the prevailing narrative in some circles that all was well and we were cruising until evil...

Nope, that would be sickness behaviour. That’s the term used in psychiatry for what you are describing. Illness behaviour, on the other hand, is used specifically in BPS and is meant to denote somatisation or secondary gains/faking.

ACT, I thought that was used for people with personality disorders to help them get their act together. They just keep rebranding the same old tried & failed approach of trying to trick/cajole/coerce ME pts into doing more activity.

Illness behaviour. I always had a strong dislike for this term. You’re not ill, you’re just behaving like an ill person. To what end? I have lost literally everything thanks to my “illness behaviour”.

Same here. And to this day my mother refuses to acknowledge that there is anything in particular wrong with her even though her activity levels continue to decline, especially now as she is getting older. When you ask her why she can’t work, can barely do any housework and rarely goes anywhere...

Catatonia and ME/CFS don't look anything alike but it certainly caught my attention that there are apparent responders to lorazepam and aripiprazole in our community. Both these drugs are used for catatonia (especially the former) even in cases where catatonia is due to an identifiable...

Sickening stuff.

I have not donated to OMF in a long time after seeing the false hope being whipped up every year.

That would be my worry also. Mild elevations of CRP are common in some types of depression. It tends to be within normal range in ME patients. Hopefully this won’t be used as a pretext to say patients should exercise more to bring down inflammation. :confused:

There was huge hype surrounding the “something in the blood” and nanoneedle. Before that, they hyped the Naviaux metabolic study and the OMF replication of that (still waiting for that to be published 4 years later lol). Then they hyped the metabolic trap hypothesis. Then they said it was a...

That was the most interesting part. You see it with long Covid now too where they’re throwing their own under the bus. Even healthcare workers are disbelieved.

Isn’t CRP typically normal in previous studies of ME/CFS?

I guess he has redefined the word “prove”. Meanwhile, in the rest of the world, patients are getting sectioned and forced into exercise precisely because there is no published replicated proof of anything.

Cyclophosphamide didn’t work either. It was an unblinded study with modest improvements well within the range of the huge placebo effect we saw in the rituximab studies.

So sorry to hear about your family’s suffering. I was just implying that ME/CFS is unlikely to be autoimmune. My understanding is that B cells have been researched in depth and nothing has been found. That, combined with failure of Phase III ritux trial makes it an unlikely hypothesis. I don’t...

Oh dearie me.

LOL https://www.rte.ie/news/coronavirus/2020/1230/1186937-vaccine-covid/