@FMMM1
Thank you for taking the time to share that information with me. I cannot believe that a disorder as complex as ME/CFIDS could get even more complicated as it slowly begins to be recognized. Twenty years ago CFS and Fibromyalgia were lumped together; both considered hysterical women’s diseases. Now Fibromyalgia seems to have been fully recognized by physicians as an illness, where ME/CFS continues to be the orphan. I am yet to find a doctor who will even discuss it with me. I suppose the problem is that there are no known cures for ME/CFS, where drugs have been discovered for Fibromyalgia.
Would you say that Davis and Navaiux (sp?) have made the most progress in the search for a ME/CFID
Mark Davis said, at the OMF Community Symposium (September 2017), that the immune system is getting simpler i.e. as we understand more. alex3619 said that we don't understand type 2 diabetes but you can treat it/live with it.
Your post also had an effect on me i.e. to request a Member of the European Parliament (Alex Mayer - MEP) to ask a parliamentary question on funding the development of a biological diagnostic test for ME/CFS [see question below*]. Alex asked the only previous question [Google - E-006901/2017 - Funding of research on ME/CFS]. The budget for Horizon 2020 [European Union (EU) Science Research Fund] is €77 billion over the period 2014-20. To date ME/CFS has got zero funding from Horizon 2020 (response to Alex's question). The EU has funded the development of a diagnostic test for Lyme disease -----. Anyone want to try their Member of the European Parliament/Congress Representative ----?
Regarding Navaiux and (Ron) Davis. I think the intriguing thing about Navaiux's research is that he seems to be suggesting that there's an underlying metabolic default i.e. you switch to a low energy state. Intriguingly Ron Davis presented data from a gene expression study (at the 2018 Invest in ME Conference) showing that ME/CFS most closely resembles sleeping sickness. Navaiux has long wanted to try the sleeping sickness drug (suramin) in ME/CFS. Ron Davis said that suramin should be available in 2019 [
https://www.omf.ngo/2018/02/06/omf-newsletter-winter-2018/]. Don't know if the logistics (money etc.) are in place to do a trial of suramin in ME/CFS; maybe we'll hear at the OMF Conference i.e. end of this month.
Phair is trying to unpick the underlying metabolic default and could potentially find a way of resetting your system. Fluge and Mella found that the metabolic fault tracks with the plasma i.e. ME/CFS cells + healthy plasma = no problem (and the reverse). As Ron Davis says the system may be fine i.e. if you can re-set it.
Many other scientists have made a significant contribution Chris Armstrong (2015 - metabolomics study ---); Nakatomi (neuroinflammation - PET scan); Hornig/Lipkin/Mark Davis (inflammation/immune); Bergquist/Baraniuk (proteomics ---); Hanson (gut bacteria ---); there are too many to name.
I think a diagnostic test would help. Ron Davis said that “It takes a village to solve a disease". What part can we i.e. those affected/with members of their families affected/others play? Lobby to get funding to develop diagnostic tests/treatments?
*Draft European Parliament Question:
“There are approximately 1 million women in the European Union who have ME/CFS. Many are unable to lead normal lives e.g. to study/work or otherwise participate normally in society.
Currently there is no biology based diagnostic test for ME/CFS and many women with ME/CFS find themselves labelled as having a functional disorder/hysteria.
Ron Davis (Stanford University) recently presented data showing biological based methods which separate people with ME/CFS from healthy controls [Invest in ME Conference - London 2018]. These methods could be the basis of a biological diagnostic test for ME/CFS and provide the impetus for research to understand the disease and treatments.
Will the Commission investigate the currently available biological based methods which separate people with ME/CFS from healthy controls and consider funding the development of a biological based diagnostic test for ME/CFS?"