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I thought Norway had moved on from all that baloney.....infuriating

All sounds good. It's great to get monthly updates..

Cort Johnson recently mentioned that he knows of three pilot trials to commence next year. I assumed it would be this year but does anyone know what they might be? Suramin, perhaps Nancy Klimas doing a trial, I have no idea what the 3rd possibility is unless its filgotinib which was discussed at...

Good luck Mermaid!! Rooting for you and fair play to you for trying for us.

Why then do the Norwegians appear to be having some success with cyclophosphamide, the fact that they have moved onto phase B of the trial indicates that phase A was reasonably successful. Also, ivig helps patients. Does that not also indicate autoimmunity. Maybe this is a very basic question...

Gosh Wonko I wish I had your zen approach but in probability the more affected one is, the more one clings to research.

Good article but timelines at the end are not pleasant to read....more funding needed and a bigger sense of urgency. I am sick for nearly 2 years but that makes me feel like, it's not a huge deal in this community as some are sick for decades with no help so it feels a bit bratty to moan at the...

So,is it possible that autoimmunity is still at play? I thought @Jonathan Edwards said at some point that the failure of rituximab in ME patients indicates that it is unlikely to be an autoimmune disease. If it's an inflammatory disorder as some suspect, is that a category of autoimmunity?

This may have been asked already but does he believe that ME/CFS could be an autoimmune disease despite the failure of the rituximab trial.

I was expecting a little more from them but I know they are doing their best. There was nothing that new...we knew about the blood since last Feb/March....we knew about viruses since August. The nanoneedle is progressing as we would expect so there was no jumping off the couch moment (if jumping...

Could he take an educated guess on when effective treatments will be found for us....

Brilliant!!!

How much did OMF get? Sorry just reading this now and don't understand it properly!

It is so disheartening listening to NIH...they never leave us with much hope. The rate of progress on the intramural study is also terribly slow. They just piss me off. Sorry, no other way of putting it.

Yes, but after watching it all, we were no further on...same questions. I was hoping for a little more but realise they are doing what they can with the resources they have. I agree about the brain needing to be looked at bigtime.

We need more than B vitamins and LDN!!!!

If this is any boost to anyone, Ian Lipkin said that he anticipated that there would be treatments found for some ME patients in less than 8 years..I emailed him, as I am eager!!* Also, Ron Davis anticipates that they will find something much sooner than 10 years. Now, in my mind, it depends on...

Isnt ampligen still in the pipeline somewhere

Well if they don't have PEM....they don't have ME. PEM is the crucifying part of ME that restricts our lives so much. I know any researcher with any knowledge of ME would not be using Oxford Criteria, that should be binned long ago.

Isn't PEM exclusive to ME. If you don't get pem, you don't have ME. I don't understand confusion about who has or hasn't the disease. I could diagnose it and I ain't a doctor. No doctor diagnosed me until I diagnosed myself...the crashing was key plus the energy depletion. For people with ME, it...