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He has been tested for bacterial infection (salmonella etc) and parasites. I screened him with lists of scientic reviews for donor’s. There are still a few things that are a possible risk, because we didn’t test them, but as he’s a close relative and always been extremely healthy, I think those...

I’m doing a ten day fecal transplant right now:) It’s pretty easy to do diy and very cheap as well.

Interesting! I hardly get uti’s anymore, but when my ME started I had about 20 uti’s in one year. Luckily, the tests came back possitive mostly and when they didn’t, I got antibiotics anyway and it always helped right away. They once wanted to fob me off as well with a “test is negative...

Even if it wouldn’t get worse in the long run, isn’t it just normal coping to not want to feel like absolute crap all the time:banghead: I hate the talking about “symptoms” as though it’s some harmless change about yourself, that you just don’t like. The actual symptoms are being ill or very...

I have declined a fibromyalgia diagnosis very often:laugh: I have the feeling it's pretty much the same kind of diagnosis CFS or IBS is: a waste basket diagnosis, so doctors don't have to look any further and it's a term to let other doctors know that "everything" has been looked at and there...

I totally agree. There was a program on MUS (called SOLK in the Netherlands) on the television here. It was about an inpatient SOLK clinic, it focused on pain-patients. There were some very enthusiastic reactions from patients and therapists. It was a 6 month program, with lots of talking and...

I have had a lot of changes over the years, I've read somewhere that there is a lot of experience that the illness changes a lot and is different during the first years and later on in the disease. I found that my problems start as soon as I sit down, with a specific chain of events. Half an...

It may be different with different people (maybe only different severity levels or maybe people have different diseases), but I really feel that it's not so much the exertion that is the problem, but more that there is something wrong with the recuperation. The exertion itself was the biggest...

I agree with you. This is the biggest problem. Otherwise I would just be sad that I couldn't do sports anymore, but I would be able to work in an office and have a social life as a couch potato. The problem is that sitting/walking for long hours is suddenly enormous "activity" and I HAVE to lie...

I agree with you that I don't think the real problems lies with the anaerobic threshold, but I am sometimes out of breath. I think the problem actually lies in the aerobic part (could also be an indirect problem, I don't know). My symptoms have fluctuated a lot in the last year, so I can...

Oh interesting! I have had this test as well and have followed the diet for three years now.

That’s because they do research on a group that doesn’t actually have me/cfs. Other than that, it doesn’t really matter how much a sick person does and how much a healthy control does, the diffrence is that the healthy control COULD do more if they wanted to. Actigraphy is a very good...

Very interesting this article! I like the hypotheses that are put forward. The snowball-effect really corresponds with my case, as I have had a lot of successive infections, lots (!) of antibiotics in my life (about 40 courses..) and then a few operations. Would low-dose immunoglobulins...

So where does the heat come from? It could be higher activity from cells in that area ( which correlates with lactate found in the same places). Or it could be from lower circulation? But he specified that he didn’t find that (although other studies did find that). Higher cell activity and...

Form what I understood from the video, they measured 4 different chemicals in different spots in the brain and the conclusions he draws are from the different levels of those chemicals and the temperature. Choline was high in ME/cfs and choline is a marker for rapid cell turnover (happens in...

Thanks a lot for the review Trish! Now I know I don't have to read the book, it will only lead to a lot of frustration.

I hope they will test more people and people with other diseases. I think a biomarker eventually will be different tests taken together to form a diagnosis, so this seems like a good start. We will just have to see if these parameters are really specific for ME. I had all these levels tested...

I feel I have two (or three) different things. First it's a reaction after one activity that was really too much. A few hours after I get some sort of "fever" reaction, where I get extremely cold with burning pain in muscles, I can only lie down under three blankets and wait it out. That takes...

I think there is a difference between “a” biomarker and “the ultimate” biomarker for ME. There are a lot of bloodlevels or other markers “off” in patients, but we just don’t know yet if it specific enough for this one disease. KDM has presented these findings of a combination of four...

I saw this study on twitter under this headline, that a biopsy has never been done in ME-patients. That is not true, I know at least one small study where there were biopsies done in patients and controls and pretty big differences where found.