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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 scientist, he/she will eventually retire at some point. So it’s better to learn to be self sufficient while sifting out the noise, because unfortunately most...

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 enjoy the company.

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 few comments. ( I bookmarked it)

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 comorbid disease, that offer treatments, these findings may help many of us to lead better lives. Were you expecting the NIH, in this phase of the study...

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 impact may differ among patients.

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 abnormal test results.

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 bald areas seem to be making a slow and concerted comeback. Only time will tell, and I hope I win! It’s time to throw the ME baby out with the bath water!

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 anyone, because it will harm my S4ME “bad ass” reputation :emoji_stuck_out_tongue_winking_eye:

If you feel like starting a gofundme page, then I will chip in. That exactly how Jennifer Brea paid for her wheelchair :emoji_grinning: :emoji_wheelchair: We may need to consider inquiring about the possibility of starting a new thread “could you please help me fund this”, where members...

Double-Blind, Placebo-Control Why stop there? Since we are dreaming, maybe we could employ the NIH, because they seem to own the coolest high-tech equipment and tools to measure all kinds of things.

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 knew a few things about LDN, which pleasantly surprised me.

I agree that depending on the individual, it’s plausible that different benefits may be gained (pain reduction, HR/BP stability, etc.), but currently I am unclear how any thyroid benefits would be gained.

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 harm. Sort of like, what comes first, the chicken or the egg (subtype vs DBPC)

It’s a WIP. https://www.nbcnews.com/storyline/americas-heroin-epidemic/dangerously-addictive-painkiller-prescribed-patients-who-shouldn-t-have-received-n767311 https://www.nbcnews.com/storyline/americas-heroin-epidemic/billionaire-charged-bribing-doctors-prescribe-opioids-n814686

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 competent doctors; and then looking for insurance plans that reimburse those doctors. It’s a very complex and time consuming process to calculate the...

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 feel LDN is worth a try, if one has no other options.