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Measuring steps is completely pointless for mild patients Wouldn't even want mild patients included in MECFS treatment studies given the current research state. I say this as someone who has spent the majority of my time with MECFS as mild. So it isn't some gatekeeping thing.

I would really not say clearly when the study was N=10 and we have some patients that we know for certain had no response. I am saying this as someone who is irrationally optimistic on Daratumumab, I`ve even donated to the Placebo trial. Placebo covers so much. They could very well just have...

Took amino acids for two years. Worsened whilst taking it, so no positive effect here. Think amino acids for MECFS was vogue in the 90s. There was a poorly conducted study looking at it which is why I tried it. Never been shown to actually work.

Yes. It is the relativity that is important. Maybe a bit off-topic, but apparently Scandinavia is one of the places with the highest step counts in the world (where I also happen to be from). The billion dollar question is if the improvement is down to placebo....

I was just looking at some of the first rituximab studies, and comparing them to the Daratumumab trial like some members were doing on the first pages here. They do have a point. The resemblance between the self reported results are eerie!! Sadly, no step counts were measured in the P1 and Ptwo...

I remember doing some advocacy work some 8 years ago. Wrote to what seemed like the main German MECFS organisation at the time. They came off as extremely professional, was pretty much immediately impressed with them. In fact I had never interacted with an org this professional before. Which was...

Very happy with the 5 additional severe patients. The blinded study will ultimately be what matters, but could be a lot of interesting data to follow in the not too distant future.

CBT ACT (acceptance and commitment therapy) Brain retraining Born free protocol Just a never ending humiliation ritual being a MECFS patient and having to endure this whilst anything resembling a treatment eludes us

As someone who believes to briefly having had a massive positive reaction to Valacyclovir, to the point where I thought I might genuinely recover. I was surprised afterwards to find how few people would claim that antivirals improved their MECFS online. Even brain retraining or something...

Thank you a lot for your very interesting post, and contribution to the discussion. I continued taking a high dose throughout, being very mindful of taking it at the best possible times to maximize the effect. I come from a somewhat privileged family, and know a lot of doctors and people who...

Think the effect when I took LDA was so gradual I basically hadn`t really noticed until I stopped taking it. My PEM with LDA was much better. Only really noticed last week after I was social with my best friend where I could not stop talking. Had my usual brutal hangover flu PEM afterwards...

After being off Abilify for some time now I do worry that for some patients it ´´masks`` cognitive PEM symptoms and thus leads to patients overexerting themselves.

Yeah. Once you reach the moderate or worse part of MECFS remission feels like divine intervention. The difference is so extreme it is hard to describe. I never fully recovered during my brief ´´remission``, and my sleep still wasn`t perfect when I was temporarily better, but even though I would...

Just nonsense from him. Sadly he makes these bizarre and seemingly random statements with such assuredness that he is able to convince desperate patients to roll the dice. I also know that we shouldn`t conclude anything from the P1 study. But it was the ´´healthier`` patients who increased...

From Leo Habets. Translated from German. Attempted to treat twelve patients already. Patients are so desperate so not going to pretend like this was not somewhat expected, but incredibly worrying.

I go back all the way to the Phoenix Rising days and always thought the idea of anti-virals was silly. If they worked, then surely everyone would be taking them? I mean even now, you barely hear any anti-viral ´´success`` stories compared to LDN and LDA ´´success`` stories. Then around two years...

German and Austrian pwME have done some unbelievable work. If my memory does not deceive me both countries had little going on 10+ years ago. I used to live in Germany for a couple of years and at least online, I feel like there was never really anything from Germany. The amount of progress has...

This is a topic that I have seen discussed a couple of times over the years. Seems like most MECFS patients react entirely normal to warts, from what I remember from other threads in the past. It does seem like a very small group, this is not the case. But this might just be because even...

So Ampligen was really something I thought I would never have to hear about ever again. Then I stumble upon this recent video with Lipkin who talks about it, and I paraphrase: What markers is he talking about? How has this been shown unequivocally? In the interview he sounds painfully aware...

Is this something that has been discussed a lot in the community? I`ve read a lot of ICC and CCC discussion back in the day, but I have no recollection of this at all! Granted it is hard to remember what was discussed in FB grps or on Pheonix Rising over a decade ago, but sleep dysfunction not...