It's a pity that the research was delayed by decades (when ME/CFS was affecting mostly women) and only when covid came around that more researchers started looking at it.
The dr said thie research needs a connective approach. I wonder if the body's connective tissue, the mast cells being in the connective tissues and the mast cells moving in the blood and the brain blood barrier....since many ppl with genetic connective tissue disorders (Ehlers-Danlos, Hypermobility Spectrum, Marfans disorders) tend to get everything involved: POTS, ME/CFS, MCAS, Small fiber neuropathy, chronic pain, migraines, brain fog, chemical sensitivies, etc.
Please we need help desperately we with fybromyalgia we are treated so badly by the medical fraternity, when I was young and sick I got ignored now iam older they like to blame it on old age,I won't even go near doctors now they have no clue help help help us thank you
I got "pots " in 2016 after getting a hospital acquired superbug infection . Before covid . I have white matter hyperintensities on MRi. I am disabled . it's bad .
I have had fybromyalgia for over 30yrs I have also had covid I got very sick from infection for covid I have suffered from chronic fatigue so badly I could do nothing but sleep I feel like I am going to die, I often can't lift my arms I am to tired long Ovid is the same,I have had Epstein bar many other severe illnesses
I appreciate you want to advertise the research studies and get patients to study and those who want to partipate but it is extremely distracting when you have them in the middle of the discussion. With our short term memory issues...by the time you do the "ad for the center", we have already forgotten what you were talking about. Maybe doing the ads befote the discussion starts...it would help us keep focused.
Why are doctors so ignorant and shut down to fybromyalgia chronic fatigue, we in Australia with fybromyalgia are treated like its all in our head even though I body is clearly breaking down,I have been a hard very active worker all my life bit by bit I have become so unwell I couldent care if I died ..A major hospital in Sydney dident even no about fybromyalgia
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It's a pity that the research was delayed by decades (when ME/CFS was affecting mostly women) and only when covid came around that more researchers started looking at it.
The dr said thie research needs a connective approach. I wonder if the body's connective tissue, the mast cells being in the connective tissues and the mast cells moving in the blood and the brain blood barrier....since many ppl with genetic connective tissue disorders (Ehlers-Danlos, Hypermobility Spectrum, Marfans disorders) tend to get everything involved: POTS, ME/CFS, MCAS, Small fiber neuropathy, chronic pain, migraines, brain fog, chemical sensitivies, etc.
Please we need help desperately we with fybromyalgia we are treated so badly by the medical fraternity, when I was young and sick I got ignored now iam older they like to blame it on old age,I won't even go near doctors now they have no clue help help help us thank you
I got "pots " in 2016 after getting a hospital acquired superbug infection . Before covid . I have white matter hyperintensities on MRi. I am disabled . it's bad .
I have had fybromyalgia for over 30yrs I have also had covid I got very sick from infection for covid I have suffered from chronic fatigue so badly I could do nothing but sleep I feel like I am going to die, I often can't lift my arms I am to tired long Ovid is the same,I have had Epstein bar many other severe illnesses
We need Ai to boost research, it's going too slow. Lives are not being lived.
I appreciate you want to advertise the research studies and get patients to study and those who want to partipate but it is extremely distracting when you have them in the middle of the discussion. With our short term memory issues...by the time you do the "ad for the center", we have already forgotten what you were talking about. Maybe doing the ads befote the discussion starts...it would help us keep focused.
Why are doctors so ignorant and shut down to fybromyalgia chronic fatigue, we in Australia with fybromyalgia are treated like its all in our head even though I body is clearly breaking down,I have been a hard very active worker all my life bit by bit I have become so unwell I couldent care if I died ..A major hospital in Sydney dident even no about fybromyalgia