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I think the inclusion criteria of the pilot trial is that the onset should be after inmunological trigger ( infection ). I am not sure what percentage of pwme follow that criteria.

I think the hypothesis is that “not all ME patient cells are sick”

I am not sure if this was discussed somewhere else but I am curious about a study that appears on the OMF website : https://www.omf.ngo/genetic-and-metabolic-markers-of-bh4-deficiency-in-long-covid/ “We have determined that individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

There was a Talk among Dr Bonilla and a group of Colombian Patients published on Facebook : https://fb.watch/hZobWQRzd8/ He said there is a study showing that Aripiprazole decreases substantially cytokines in 4 weeks ( remember a study from Montoya : Cytokine signature associated with disease...

I think that because the charity needs to meet the requirements of the Spanish law 49/2002 : article 2 and 3, https://www.boe.es/buscar/act.php?id=BOE-A-2002-25039 It would be difficult for a small foreign charity to do it due to administrative costs , unlike well known international...

Many thanks to all the people involved !!! I find it very helpful. I already gave it to one of my doctors :)

You found that cellular phenylalanine is increased in ME patients. Do you have any hypothesis on why this may be happening ? Dr. Phair is studying Metabolic Traps . One of them could be the Tyrosine trap in which tyrosine hydroxylase may be substrate inhibited . Any thoughts on this and how...

What is the reason why we don’t know anything yet about the ME/CFS metabolomics validation study ?

Nancy Klimas and Gordon Broderick recent paper ( Introduction, page 1) : It is not improbable that ME/CFS may serve as an umbrella term for multiple different diseases associated with overlapping symptoms...

I was very moved by your words. Thank you so much @Chris Ponting !!!!!

It has to be tested on other illnesses where “fatigue” is one of the main simptoms. Even if it was a Test for PEM, it would be amazing. Time to apply for a NIH grant !!!

I thought ME was a hypometabolic disease :cry:. I am confused.....

I got that "impression" from the other forum. But it doesn´t mean that other Traps may pan out.

I honestly felt disheartned by this update. It looks like we went back in time : mold , Mercury, and “something in the blood”.... the same as two years ago And we know NOTHING about dr. Naviaux validation study who has been swallowed up by the earth or dr Synder study. I don’t think the tryp/...

Patients Associations who made this petition are trying to gather support from professionals (international ones are welcome) This is the link for those who want to join it: https://docs.google.com/forms/d/e/1FAIpQLScMCA_uTX1MdHdb6UAW_BNBK5UW9SAXp61_WVFsfByDPf6v0g/viewform There are already...

Recently our Social Security has published a ME Manual. This serves as a guidance for the Spanish doctors who have to evaluate if the Me patient is suitable for work. Among other nice things it states : “Cognitive behaviour therapy and Graded Exercise Therapy have shown to be very effective...

I am very grateful to Elisa Oltra :heart: for her commitment with ME patients and also to “Universidad Católica de Valencia” for the research grant. Unfortunately this paper is too technical for me. I would love if anyone could summarize for us the conclusions in plain words if posible.

I wouldn´t exclude the possibility that PEM is unique to ME. I presume that current studies may also have a significant percentage of non Me patients. It is difficult to have the right answers if you are mixing patients with several conditions. Anyway I look forward to watching Dr. Nath´s...

Unfortunately I don´t think they are interested in finding biomarkers since recognising ME patients ( and presumably many more that currently are undiagnosed ) would be an economical problem if there are no treatments.

Let´s see what Mark Davis has to say at the NIH Conference next April