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Dear Invisible Woman, your statement is absolutely spot on, and pertinent. This is exactly what happens! (My daughter was told by the doctors, when she said she felt tired, to simply go back to work, and that things would replace themselves. Being young, and keen in her newfound profession...

To me it looks as though a) many of the current researchers (aside from Dr. Davis) are not exclusively focused on this illness, b) there isn't the will to dedicate enough money to ME ( and LC), and c) there isn't the talent (with obvious exceptions)--not enough brilliant minds working on this...

Dear Dr. Edwards, this 'new way' is really grim indeed. But if "nobody of relevance" has decided that nothing much will be done, or just nonsense will, can we call these folks relevant. And this begs another question: what do folks of relevance do? they are clearly not very relevant are they...

Bravo to you Milo. Yes, objective measures, and time lines. I am so tired of: do you feel 'a little better?' This disease is very unstable, and fluctuating. There has to be a way to measure outcomes.

If this is possible, then it must be why my daughter came down with this hell; she came down with ME 2 months after stopping cipro (and flagyl) for clostridium difficile. She had for a few days what she said felt like a flu, and then called me and said she was unable to stand up, unable to rise...

This is a digression: the winter before the pandemic I met a woman in Florida who lived in New York during 9/11, and she was near the buildings which were hit, very near. Her apartment was literally a block away. She became very ill, with what resembles CFS/ME to my eyes. She told me that the...

Thanks Mij for the details; the clinic in Sherbrooke will have the patients stay there like in a hospital and conduct their testing that way.

This morning on Radio Canada I heard that a clinic has been set up for Long Covid patients in a town called Sherbrooke, which is about 100 miles outside of Montreal in a very attractive rural area. They will be testing these patients in order to try and determine what is wrong with them. The...

Holy Mackerel!

Ash Wednesday has started this week. Glad you reminded me of these phrases once again.

Yes, L Carnitine is very interesting; I do not haveME, but I use 3000-4000mg per day to deal with being in the grey zone on the edge of moving to hyperthyroid. Many years ago an Italian endocrinologist used this method, along with an occasional Ativan 1mg, to deal with folks in the grey zone. I...

We may off topic, but you have my deepest understanding. I am so furious I could bash a wall with an axe. Why can't they sort this out? There are a handful of brilliant minds on this, but clearly not enough at all, just not enough at all, not for such a serious disease. Best wishes Bill.

The first doctor who looked at our family member, (an infectious diseases doctor well aware of CFS and ME) put on the medical summary: post viral syndrome (in French). We used that for a bit. (That also met with stares.) After that we used CFIDS for a long while--and I would enunciate it to...

A personal story: Our family member has always had low morning cortisol since contracting ME. And the ME doctors in the USA and two we saw in Europe prescribed hydrocortisone. She has been on a variety of doses, from 5mg to 20mg over the course of this long illness. It was given to her...

Cheesus, this may be a digression, but....was Nestor's book useful in terms of offering various breathing exercises and techniques. I heard the book focused on the history of breathing practices, and some readers felt a touch shortchanged. I'd be interesting in buying it, but could you help me...

I haven't followed the whole thread, but isn't this the reason why Dr Ron Davis wanted this illness called Systemic Exertion Intolerance Disease SEID? And yes, Bill, I agree, the frustration is really building due to the lack of progress. And yes, best to keep our eyes on the prize...

A year ago I showed a psychiatrist a list of the various studies being done on ME (with very short 3 line summaries). He flipped through the pages and said: Holy smokes, they are all over the place. They just don't know what is going on. I think that it might be useful for Stanford, if they...

I just looked at his website, and he is very productive, and his work looks inviting. From what I can see he tends to write for young adults and children. I tried to find out about more about his life with ME, but there was nothing there about this, except highlights from this new book which I...

Thanks, I corrected it.