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This is excellent reporting from CTV news, primarily about long-Covid but it also covers ME widely. https://www.ctvnews.ca/health/coronavirus/more-than-two-years-of-long-covid-research-hasn-t-yielded-many-answers-scientific-review-1.6235227

But it is likely that your gains would have been registered as a success in a clinical trial and left your therapist with the impression that it was very effective.

Hi @SunnyK I have had several surgeries within the span of 2 years, under general anesthesia and it hasn't been a problem for me. The thing you need to consider is that many patients with ME have a problem with the local anesthesia if it contains epinephrine. The area being removed in your case...

I refuse to read or even open that one blog.

I have to disagree with you. Walking on flat surface, or walking downhill requires much less energy than climbing stairs. The demand in energy for climbing stairs is greater than walking a flat surface. I have learnt this very early on in my disease. I simply do not do stairs. I cannot walk a...

I think SF-36 could be use generally as to assess a cohort's level of illness and compare to another cohort between studies. For instance one cohort with high level of physical functioning compared to another cohort that is much more severe could be used to assess the general level of disability...

Here is what we have learnt throughout the last decade from SF-36. 1) Patients are sick 2) Mental health is good 3) PwME can be more disabled as patients with MS And here is what I have learnt from filling out SF-36: 1) The quicker you get through it, the faster it will be over. Answer...

Self-report instrument that is not specific to ME. Some of the questions can be ambiguous and subject to interpretation. One section the SF-36 pertains to general health. Are you healthy, and are you just as healthy as anybody else around you? This is a tricky question with a chronic illness...

I agree with you Trish, I don't understand it either and the paper seems to be very careful in trying to find any explanation- instead they have spent time describing their experiment. It is fascinating to me.

Please allow me my daily dose of sarcasm. Can anyone point out to me why these authors did not measure catastrophization in this instance? Are they out of their minds? The insurance companies won't like this much.

The problem with the study they did was they tried the drug before "thinking about doing a study". That means that the patients were not enrolled in a clinical trial. The patients were invited to take this medication that the doctors think could help but it is off-label. They may well have told...

We are particularly lucky you have joined us here.

From reading patient experiences with getting access to LDN, one of the biggest mistake physician make that leads to failure is to start the med at too high of a dose. "Start low and go slow" is what's recommended. And starting at 2 mg may be too high for some. Instead, try 0.5 mg and work your...

I worry that LDN has been hyped and promoted as a treatment for both ME and FM and "believed" as being helpful by doctors who frequently prescribe it. I worry that the subjective outcome measures are weak and there are few randomized, placebo controlled trials are scarce. To this day LDN is not...

Also @Raven you can skip questions or entire pages if you don't want to answer.

I didn't get Covid myself (knocking on wood) but I have caught the flu on January 1st, and it's nasty, I still get fevers and chills. (4 negative home covid tests) I have worn my cloth mask every time I stepped out of my apartment and only went to the grocery store. The risk factor I see is...

One questionnaire was clearly about catastrophization. Like people above, there were questions where I wanted to answer none of the above but there is still a problem, or assuming things that were not right for my case. It was horribly long and I gave up in the end. Not holding my breath. It...

thank you for your tenacity Caroline.

This is a a qualitative study of the experiences in health care of 20 women. No more than that. It is meant in my view as a preliminary and exploratory study.

Indeed, however this was a gender-based study. It was also a qualitative study on women's experience with chronic disease and its associated contacts with health care professionals. The authors mention in their background paragraph: "The androcentric history of medicine and medical research...