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I know, I know. I normally can’t read about this stuff at all without vomiting;):laugh: The only reason why I kept reading, is because my friend knows one of these people personally. They live in her town and they were diagnosed with me/cfs and OI by a proper dutch me/cfs doctor (with table...

Does anyone here know Ken Ware? Apparently he’s pretty well known for his rehabilitation work with severe spinal cord injury patients. 5 me/cfs patients (moderate/severe with pots) from the Netherlands have gone to Australia to be treated by this guy and four out five have made an amazing...

I have responded quite well to disulfiram, but it was very hard to build up. Took me months to get on a good dosis. I check my liver every month. I am still wondering why disulfiram is working, it could only be the effect it has on dopamine. I do wonder about that. I have to say that a few...

Interesting! There seem to be a few new treatments like this around. I’ve been on and off disulfiram for almost a year now and doing very well, but I still have to see if it stucks when I get off it.

Just a little bit more patience, the research agenda will be public within a few months.

Wow, I just... can not..:banghead: well, at least we are not only ones who are improperly psychologised anymore:laugh:

Oh that's interesting, as my whole family has polymyalgia and my mum got two years of prednisone for that. She got rid of it though. A friend of the family has it as well and is kept on low dose prednisone and extra for flares. I have a cousin that has RA and she got prednisone right away, but...

I wil rephrase and just say that I have no way of knowing who is a distinguished professor and who is a fringe doctor then. Sometimes things will be fringe or experimental now and common knowledge in twenty years. I can also imagine that I just have a different understanding of the word fringe...

I totally agree. Doctors are actually trained to view people with list as hypochondriacs. The only thing I repeat with every consult, is that I don't have fatigue, but ME/CFS and that exertion is the problem. I hope that that might be such a simple concept that it will stick at one point.

That is sometimes the feeling I get, that this disease is still not "legitimate" enough to even think about giving any medication. That is exactly the reason I woud like to see a lot more research on these kinds of low hanging fruits. We don't know.We don't know the side effects, we don't know...

I think it's difficult to see what's going on because of that dichotomy. On the on hand, the medical world falling for these kind of ridiculous simple solutions to complex problems, on the other hand super high tech cutting edge research going on in that same medical world. Makes people believe...

So, that pretty much makes everyone a fringe-doctor? I really would like to know what kind of evidence you have for it not producing drastic benefit? Two out of three clinical trials that were done, were positive? In a disease where we literally have no treatment, no biomarker, no nothing, I...

I have tried to find the article again, but I can not find it. It was definitly not some fringe doctor, but an established professor at one of the universities here. I realize that treatment is not without risks, it never is. The alternative is spending my life in a bed, risk free. I think the...

My records don't say anything I think. I lost trust in the system, went to a private doctor and never discuss my ME with my GP anymore. They have no idea what it is. When I go there for other minor problems, I now always say (with a bit more confidence than earlier) that I, of course, have...

Wow, your last sentence is so true... Is there no worry? I think, if there is, the medical community caused it. In the 50's the advise with acute backpain was bedrest. In the 70's and 80's scans and surgeries for everything. As a reaction to that came people like Sarno, with mind-body theories...

Which doses are you talking about? I just want to ask, because I see low dose cortisol being described as somewhere between 5-35mg, where 5mg is probably too low to work and 35mg is suppressing your own adrenals and probably already works as an anti-inflammatory treatment. In one of the trials...

Thanks! This is from yesterday, I hadn’t read it yet. More people thinking along the same line, that’s really cool!

Forgot to attach a link: The three clinical trials are mentioned on the me-pedia cortisol page. https://me-pedia.org/wiki/Cortisol

I have been reading a bit into the three cortisol studies that have been done in the 90’s. I would like to discuss the ideas that come out of a critical evaluation of these studies. A lot of it is stating the obvious in my mind, but I still think it’s worth discussing. How could we repeat these...

I am extremely happy with this paper. I really like the comparison with the acute phase and chronic phase of ICU patients. I think in this group of patients there has been a lot of attention an research on the acute stadium, but not on the chronic phase. The post-sepsis groups do seem to...