Dr. Edwards, not wishing to change the discussion, but curious:
what about fibromyalgia points being painful. A good number of pts seem to have this also. Dr. Moreau in Montreal said with his test he could determine who had this additional symptom and who did not.
Secondly, what about autism...
Every time that I read Veronica's writing I am moved to tears by the time I reach the end of a poem. Such incredible beautiful writing, and encapsulating so much longing and unbearable suffering.
Curious what is the opinion of the science savvy folks on S4me about Dr. Wirth's thesis. For a layman like myself it does look very rational and seems to explain all the symptoms that appear. Would be grateful to hear what others think. Thank you
Not sure where to post this: list of clinical trials for LC and ME:
https://crunchme.notion.site/4d00e39f9f874a4c85cb9046149aeba7?v=2c3284eb773a403e817db9598480a768
OMF just posted an interview with Dr. Systrom. Very discouraged here: gives the impression that Mestinon & LDN will help, and then doctors everywhere will be able to prescribe this off label. IN the USA many pts have tried the two already, years ago. CFS doctors were offering it to try. Pts did...
I have a few friends in the UK & Ireland who are on LDN, but it has not really helped, according to their reports. Folks are desperate and are willing to try almost anything. No substance so far touches the core problem of Exertion Intolerance. If trialling these 2 drugs is a way of learning how...
I have been in touch with pts in Germany, who were trying it, and also no decent results, and many side effects. If this is all that is on the table for trialing for this horrific illness, then heartbreak and tears. Best wishes.
OK, mea culpa for assuming what is available in the USA is also available in the UK.
in the USA it is easily available. In the early 2000s it was truly widely prescribed by physicians dealing with chronic illnesses, ME and Lyme, etc. There were and are pharmacies ( I dealt with one in Forida)...
These 2 drugs IMHO will not result in much, and this is a waste of money. LDN is not tolerated by many pts due to side effects. Improvements are minimal, in those it helps. Most pts have tried and are trying LDN. I have not met a soul who has not tried LDN. This is not a solution. As for...
Another brilliant perceptive post dear Hubris. Thank you. Actually there isn’t enough work done on the effects of being forced into this kind of life and what it really does emotionally and mentally to a person who has to amputate every single human desire day after day because otherwise their...
You describe this very well and my daughter has used similar words. No one should have to have this happen to him or her. We don’t really live in a careful and caring world if young people are abandoned to lie in their sick beds for years on end. There is no urgency anywhere at all except in...
Thank you. From what I see it looks more like severe weakness, not fatgue: a complete inability to generate energy, and when after days and weeks of immobilization some energy is manufactured it is a tight rope walk because using/ overusing what is in the bank ( which you can’t see) leads to PEM...
Thanks Hubris: your comment is brilliant. My daughter was a criminal lawyer, and indeed the criminal's life is better than a pt with severe ME: which destroys not only your life, but if you are sick long enough and severely enough, it can start to fracture your personality. Because identity and...
My daughter tried IVIG and it did not alter things: after several infusions, her mouth swelled, tongue swelled, and Benadryl IV had to be administered. Another doctor later said not to try it again.
Thanks. Now to move on: there will be another ME conference in the UK. Does anyone have more details, so that we can register to watch. I registered early for Berlin conference, but I noted there was a point at which folks could not register. So, if anyone knows about the UK conference, many of...
This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
By continuing to use this site, you are consenting to our use of cookies.