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Getting COVID made my “mild” ME much worse. (Mild in quotes because mild ME is not mild relative to health.)

Yes. This has been a big issue for me. And not to derail the thread, but it’s a big reason I struggle with pacing advice because I find that it overlooks the phenomena that “an activity is fine until for no apparent reason it isn’t.”

I am looking for information on possible risks/side effects of fludrocortisone in people taking it for OI reasons. I remember reading elsewhere on this forum, perhaps by @Jonathan Edwards, that taking it over time may cause long term dependence on the drug, and possible serious adrenal problems...

Some personal observations about OI: -It has worsened a lot over the course of my illness. -The best way I can describe it is it feels like if I am standing, I am like a vessel for liquid, and there is a drain near my feet. The liquid is energy, and the longer I stand up, the more energy that...

Me, too: Some observations I’ve made about taking showers: -Sitting is easier than standing, but even sitting can be hard. -My heart rate can increase 50 bpm above resting in the shower, even when sitting still. -Washing my hair is the most tiring thing about showering. (In other aspects of...

Yes!

I thought the same thing. And also, what legitimate clinician would take advice from JL about this protocol? That would be nuts!

Wow, I feel really happy for him. It must feel incredible to regain that ability. In my head I kept telling him “don’t overdo it!” as I was watching. But, that’s something he knows as well as the rest of us. @Yann04 - big hugs to you.

What is a “data project” in the context of journalism?

Hi @nwbh - in case you haven’t done so already, you might contact the MassME organization, as one of the services they offer is doctor recommendations (which have been crowd sourced by other patients). Most of their docs are in Mass given the location of the organization, but they do keep track...

Yay! Hope it gives you some peace of mind and I’m glad the sound isn’t too bothersome.

Should people with ME be concerned about loss of muscle mass while taking these drugs? I noticed that as long as you didn’t have an underweight BMI, you could still qualify for the LoCITT trial. But presumably then a lot of people could qualify even if they don’t want to lose any weight or muscle…

Just curious, @RaviHVJ - any updates on your friend’s zine?

Let’s say ResetME is shows Dara works. At what point would patients be able to access the drug? Would they have to wait for yet another trial? Or would a future trial be able to happen concurrently to patients getting the drug outside the trial.

I’m glad someone is thinking about how to bring the trial to the patient rather than vice versa. Most studies still seem to wildly underestimate the toll it takes to get to the clinic. If they even think of it at all. It’s good they’ve even thought of ways to get the patient to collect their...

Could you elaborate on this? What makes it so bad?

Nice job!

Chiming in here because I struggle with similar issues you listed. The other issue for me is the pace of discussion on some research threads goes to fast for me to keep up. For instance, I came across the Daratumumab thread, read a bit, then when I came back later there were pages and pages of...

I get frustrated by the undesired work his and other clinicians’ unfounded claims create for me. My well meaning family members see claims like these and get hopeful thinking that there’s something helpful I can try, and I have to find a way to explain why it’s probably not gonna work out.

Indeed. I can think of several drugs/avenues of treatment that he has touted over the years without compelling evidence. Before this, he made claims about how helpful oxaloacetate is for his patients. Before that, it was MCAS treatments, etc.