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Something that might explain the differences in opinion in these and other matters related to ME is very different views of what ME is. That other ME, that to us sounds like a gross misunderstanding, might really exist. And maybe these guidelines were developed with that kind of ME in mind.

Do you know who is creating and promoting these theories?

The Baxter paper describes it as "problem of nutrition and hydration" which is a good choice of words. https://www.mdpi.com/2227-9032/9/4/459

I suspect the people who would do this are more the crowd that fears more mitigation measures against the virus, or who think long covid is an invention by governments for social control, or a way to hide vaccine harms.

In my view it still needs to be clarified what is actually happening in these cases. Is it weakness of the muscles involved in swallowing, does the exertion of eating trigger PEM, is it feeling sick when food is in the stomach? Best to describe the problem as what it is.

That could be true. I don't know since I haven't been in this situation. We patients probably use these theories of to resist psychologization and because we hope that they might help. Not because we want to resist an uncomfortable truth (like the psychologizers like to believe) but to resist...

Eating disorder has this connotation of psychological cause. Which then leads to helpless patients being assaulted with strange theories.

No illness can be cured by stopping believing in it. If someone with hypochondria is misdiagnosed with ME/CFS and gets better by stopping worrying about their health, it says nothing about ME/CFS. In Garner's case it looks like he recovered in the time window where this usually happens. It's...

Typical for me is also this: I get out of bed and two seconds later, fall to my knees or flat on the ground. Happened this morning. When there is no fall, this problem can also look like staggering about for 10 seconds as if I was very drunk. When handling things on the floor and standing up...

Abstract Objective Orthostatic intolerance is typically thought to be sporadic and attributed to cerebral autonomic dysfunction; we sought to identify families with inherited autonomic dysfunction manifest as symptomatic orthostatic intolerance to characterize mode of inheritance and clinical...

The funny thing about this is: these people have lost the scientific debate years ago. Their ideas are simply without merit, and smearing their critics in the press won't change a thing about that. In the PACE trial, which was presented as definitive test of the CBT/GET approach, there was no...

My muscles tire more than that of a healthy person when walking, and this is visible in my gait. I begin walking slower, use my hands for extra strength while walking up stairs, I don't raise my feet as much and this makes my gait look stiff and, when my muscles are very tired, my feet will...

Are these cases similar to what one might see in eosinophilic esophagitis?

I'm not sure that I've seen a good description of what these patients are experiencing. In some cases the feeding difficulties appeared to be due to weakness of muscles, in other cases the problem appeared to be that eating was intensely unpleasant due to symptoms it provoked once the food was...

I wonder if this fits with my experience that eating something can greatly improve symptoms of orthostatic intolerance. How would eating improve blood flow? Maybe by insulin or some other eating-related hormone stimulating the Na+/K+-ATPase. It might be worth trying a medication that has a...

This confusion is probably because psychologists are not able to admit that with pain they're not measuring a real phenomenon but a perception of a phenomen, which is easily influenced by many things. One can replace the word "pain" with "the perception of pain, how it is interpreted and...

This is an opinion piece. The authors believe that staphylococcus aureus plays a role in about a third of ME/CFS cases but do not report any data that supports this.

I hear you.

It seems clear that some patients given a FND diagnosis believe it is correct, and that they are gaining something from the diagnosis. It can be a lot better to have an imprecise diagnosis than none at all.

My neck pain improved a lot with just strengthening the muscles and stretching. We patients tend to lose muscle strength and often spend much time looking on screens or with a pillow under the head which could increase neck pain. I didn't believe that I had any of the problems discussed here. I...