THE FOLLOWING POSTS HAVE BEEN MOVED FROM the EXTRACORPOREAL PHOTOPHORESIS THREAD BECAUSE THEY INTRODUCE A NEW TOPIC ABOUT LOBBYING FOR ME/CFS RESEARCH FUNDING
Hi, I've been trying to "force the system" in France and the rest of the European Union.
I live in part of the United Kingdom (UK); the UK is associated with classifying ME/CFS as a psychological illness as well as PACE. Recently a group in Oxford and Newcastle Universities showed that Single Cell Raman Spectroscopy is a potential biological diagnostic test for ME/CFS. Ron Davis presented other potential biological diagnostic techniques at the Invest in ME Conference (London June 2018). I assume Ron will present this at the OMF Community Symposium in a few weeks.
If there's a biological diagnostic test then potentially your doctor can use that as a basis to consider using off label treatments (drugs, IVIG---). Ron Davis pointed out that you could potentially filter out the compound in your blood which affects the cells; potential treatment?
The European Union (EU) has funded the development of a diagnostic test for Lyme disease. Here's a draft European Parliamentary question asking that they fund the development of a diagnostic test for ME/CFS [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461]. I've asked a Member of the European Parliament (MEP) to ask this question.
It is possible to get European Parliamentary questions asked. I was involved in this one regarding funding for ME/CFS [Google E-006901/2017]. I'm not sure that there's even been one other question. ME/CFS got zero funding from the 70 Billion Euro EU Horizon 2020 fund. Lyme disease got millions for the development of a diagnostic test etc.
No offence intended (this applies to me as well) but we could try to talk to those who can fund research, the development of diagnostic tests etc. as well as those with ME/CFS and their families. Would you/any other reader ask their MEP to ask this question/a question [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461]. Don't know the American system but possibly congress/representatives.
Regards and lets try to force the system (the EU has 70 Billion Euro in its Horizon 2020 fund).
Hi, I've been trying to "force the system" in France and the rest of the European Union.
I live in part of the United Kingdom (UK); the UK is associated with classifying ME/CFS as a psychological illness as well as PACE. Recently a group in Oxford and Newcastle Universities showed that Single Cell Raman Spectroscopy is a potential biological diagnostic test for ME/CFS. Ron Davis presented other potential biological diagnostic techniques at the Invest in ME Conference (London June 2018). I assume Ron will present this at the OMF Community Symposium in a few weeks.
If there's a biological diagnostic test then potentially your doctor can use that as a basis to consider using off label treatments (drugs, IVIG---). Ron Davis pointed out that you could potentially filter out the compound in your blood which affects the cells; potential treatment?
The European Union (EU) has funded the development of a diagnostic test for Lyme disease. Here's a draft European Parliamentary question asking that they fund the development of a diagnostic test for ME/CFS [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461]. I've asked a Member of the European Parliament (MEP) to ask this question.
It is possible to get European Parliamentary questions asked. I was involved in this one regarding funding for ME/CFS [Google E-006901/2017]. I'm not sure that there's even been one other question. ME/CFS got zero funding from the 70 Billion Euro EU Horizon 2020 fund. Lyme disease got millions for the development of a diagnostic test etc.
No offence intended (this applies to me as well) but we could try to talk to those who can fund research, the development of diagnostic tests etc. as well as those with ME/CFS and their families. Would you/any other reader ask their MEP to ask this question/a question [https://forums.phoenixrising.me/ind...dicine-fatigue-and-me-cfs.61368/#post-998461]. Don't know the American system but possibly congress/representatives.
Regards and lets try to force the system (the EU has 70 Billion Euro in its Horizon 2020 fund).
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