Thanks, just read it. It’s nice to understand different perspectives.
I have learned that I need to be my own advocate/researcher. Even if one has access to an amazing doctor, or choose to rally behind a top...
How can we thank the scientists involved? If many are investing years of their career, then I want to keep them as highly motivated as possible.
Okay, then we are on the same page, and also in the same ME boat. :emoji_slight_smile: We don’t have a course plotted, nor a captain, but I do...
Hi @Inara Thank you for posting. I am still a bit wiped out from the loss of Bob. But I hope to read your post in the next few weeks, and make a...
I have comorbid diseases that are well known and can be managed (but not cured) with daily medications. I feel if the NIH can identify more...
Yes, that seems to be the main issue, finding a specialist that is well versed and helpful. Regarding Empty Sella specifically, I thinks it’s...
It’s great to hear the inside scoop re the study dynamics and also excellent to know, that at the same time, they are following up with your...
Yes, I agree about the relationship. Hair loss was the first presign of ME as it first attempted to hijack me. But after 5 years, the once stark...
I enjoy your passion, so please feel free to get carried away.
Well actually I would chip in, since I am a very kind and caring person, and have spent my entire life helping others. But please don’t tell...
If you feel like starting a gofundme page, then I will chip in. That exactly how Jennifer Brea paid for her wheelchair :emoji_grinning:...
Double-Blind, Placebo-Control Why stop there? Since we are dreaming, maybe we could employ the NIH, because they seem to own the coolest...
In the past, I also used a compounding pharmacy and requested vegetarian capsules and a specified filler. I sat and waited for my meds. The owner...
I agree that depending on the individual, it’s plausible that different benefits may be gained (pain reduction, HR/BP stability, etc.), but...
That’s a challenging task to figure out exactly who in our patient population would benefit from LDN, who would not benefit, and who it would...
It’s a WIP....
Do you know if CBT/GET is prescribed for other Dx, besides CFS? In the US, from my perspective, no matter what the Dx, it’s all about finding...
Is there an appeals process one can persue, if a service or treatment is denied?
I tried LDN, and it had some mild positive effects. But then I graduated to drugs that were better suited and targeted to my individual needs. I...
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