Search results

I read some of the responses. They could be summarized with: they all agreed that activity was problematic, until they started thinking positively and stopped "doing ME" and then they were cured.

I'm getting the impression these cognitive tests are inadequate.

Vogt: your science is unreliable but we know LP works. How? Just look at this outcome switched uncontrolled study and these anecdotes.

I see Vogt and Gundersen are still arguing it's all deconditioning. 2 days ago I did a nice walk and felt ok. Yesterday it was a little shorter. Today I can barely manage 1/3 of the same distance, walk slowly, feel like crap. When standing up, I also had a moment of such low blood pressure that...

The endorphin release associated with placebos could be part of the body's behaviour control system. It could be seen as the reward for finding a solution a for health problem. It makes sense that it hurts until you find a solution to the pain. Then it no longer need to hurt as much and your...

I would like to know if it had anything to do with his views on ME/CFS. It could be a point of personal conflict.

Hard to believe. He always came across as warm and caring.

Some patients say they feel good after a fever.

There was a 4 cell RCT of immune therapy, CBT vs placebo respectively. No benefit was found. Read Wessely et al comments to this study here: https://sci-hub.se/https://www.ncbi.nlm.nih.gov/pubmed/7709961

The "magic label" was the hype and hope for Rituximab. It may have been the first time ever some patiens felt that effort was made to help and that they weren't ignored or belittled. This context cannot really be replicated. CBT/GET probably doesn't work well as placebo because generally...

The advice to elevate the head end of the bed by 10 degrees is given for POTS. I tried this several times but it seems to make my sleep worse. I suspect it causes an increase in heart rate which reduces sleep quality. Elevating the legs often leads to improvement within seconds (may take a...

They're trying to establish the view that it is morally good to treat ME/CFS as non-disease. They're keen on proactive social engineering. So that disability claims can continue to be rejected.

After you've excluded heart conditions make sure to also exclude POTS.

There were at least 3 researchers that seem to be new to ME/CFS.

Can't tell if they are crazy or just dishonest or very stupid. The reason patients see themselves as patients is because they are sick. They cannot function normally.

A useful I think way to think about ME/CFS in the context of subgroups is that we cannot reject the idea that it's mostly a single disease (after allowing for some inevitable misdiagnoses). We also cannot reject the idea that it's many different diseases. It is useful to draw a boundary...

A friend's friend has multiple sclerosis and is bed bound and slowly dying from it. There are also people that have multiple sclerosis and don't look sick and can function fairly well in daily life. Same illness, looks totally different from the outside. I understand that MS can also produce a...

I could relate to her when she crashed hard after going out, although I don't crash in the same way as she did in that scene. Then again I'm not as ill as she was at the time and it's difficult to predict how things would be if I was.

A muddle is the reality. There may be a human tendency to respond to uncertainty with dogmatism but this is of no help when wanting to find out the truth. It is easy to define some hypothetical true ME as whatever remains unexplained, or by whatever some authority figure says (but why this...