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Guido, can you tell me what you think is the best description of true ME? Moderator note: This post has been copied and following posts moved to this thread: Diagnosis of ME and the use of the labels ME and CFS.

This post has been copied and following posts moved from this thread: https://www.s4me.info/threads/news-from-the-netherlands.15014/page-2#post-311913 Guido, can you tell me what you think is the best description of true ME?

Wow Trish! I was pretty happy with this paper, but you have made some excellent points! At the moment I am mild and experience very little PEM, due to very strict pacing. Your separation between fatiguability and PEM is spot on!

Ha, you are right, It's just "a" lyme treatment. I have decided to follow one intensive protocol, I don't want to get stuck in a crazy lyme-treatment cycle. PCR is known for having more false negatives and not false positives. I hardly see how you can have false positives. How can, say, a...

I agree that there should be more testing, but I have seen data from tests with healthy control groups. How exactly is it invalid? I don't see how a PCR test could be inaccurate? Of course it could all be a big scam, I am not saying that's not possible at all ;) but if that's not the case, that...

i didn’t know the rules were this strict in Norway! I have the same thing, I have no problems trying things out. Yes, it has a risk, but until now I have never had an adverse reaction and I’ve mostly stayed on the safe sides wit medications. Slowly, but surely, I have gained a lot of...

I think this paper is a good start. To be honest, I have lived with this for years and even I have a hard time making sense of my symptoms and the ins and out of PEM. The symptoms are not always the same, it's not always the same severity and it's not always the same timeline. it all depends on...

Thank you for your blog!

No, I don't think it is readily available now. I just feel that if all the current knowledge would be used in a strong clinical streamlined protocol (and people would agree on this!), we would be able to help 95% of people with IBS and we could set up a strong research program to solve the other...

Very good to read! I am involved in this project, so I am very proud that it is written about in such a positive way:):):)

This seems like a genuine story, but I agree with Trish, it doesn't seem like it made a difference to the problem, just with the coping. It does provide a good story about the severity of IBS and the necessity of finding a solution. I don't believe the statistics (the link with...

Yes, I have this. After exertion, I wake up with a dry mouth, have to pee every ten minutes. Basically a very bad hangover.

That’s even more impressive!! The tide is really turning:thumbup: Also, the amazing amount of people signing up to contribute to research in such a short time, should hopefully interest journalists to turn this ridiculous narative around of patients being “against” research. Quite the contrary...

Congratulations!! Very good to hear:laugh: Just wondering: is this project financed by the UK government or was it financed by private funds?

Isn't it interesting that in the 90's all the anti-quacks were going crazy about the non-existence of candida overgrowth and the dangers of anti-candida diets. Turns out the quacks were (a bit) right:laugh: Candida overgrowth is a thing since the importance of the microbiome was discovered. The...

I don’t really understand your first point of critique? Could you elaborate? How can severe patients have the same blood flow as healthy individuals? Second point is interesting, I didn’t know that there was diurnal variation in bloodflow? Does is really matter as the patients are compared to...

Omygod, this is just bizarre. We don't even really know how general anesthesia works, but of course a rare side effect in a person must be psychosomatic:banghead::banghead:

Of course! I didn't mean this in any negative way. I mostly meant the specialists that make up these theories, what people do they see? I don't know how it works in the UK, do you have choice in the specialist you are able to see? I have read stories of a few people who welcomed their diagnosis...

It's not the amount of blood, but it's the blood flow. They constantly measure heart rate, stroke volume index and end tidal CO2. They measure the diameter of the arteries with the ultrasound.

There is such a strong selection bias in patients, which probably confirms their own ideas a lot. The patients that accept these ideas are probably more prone to have trauma in their past or significant secondary depression or anxiety. I would never accept this nonsense about trauma or anxiety...