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I think so too :)

I tried LDN a few years ago, I had very bad reaction to it and couldn’t tolerate it.

http://www.pbs.org/video/chronic-fatigue-syndrome-7rquhm/ I can’t find this posted....sorry if it is. It’s around 25 minutes and includes an ME advocate. Ron Davis is mentioned and a brief history of ME, including cluster outbreaks.

So, I’ve managed to listen to the interview with Sonya...it was really good!

Hmmm so I’d hope the CMRC doesn’t do a joint conference with this group.

I too am thinking I won’t be here to see treatments be discovered. It is absolutely soul destroying you are right @Jan I don’t have faith in Holgate, Pariante or Harrison.

I’m liking what I hear about @Chris Ponting and I hope he will have as much free rein as the person he is replacing had. My niggling concern is the Functional Neurological Disorder research and the team who are doing it. I would like reassurance that this is not going to be BPS under another...

That’s brilliant :thumbup:

@Simon M I look forward to seeing what unfolds, the platform sounds a good idea and @Chris Ponting seems like he’s going to be much more transparent and interactive with patients....I really do hope good things are going to happen. I hope Chris will agree to do an interview with @Andy that...

That’s good to know @Simon M :thumbup: I look forward to seeing what unfolds, @Chris Ponting looks to be much better suited to the role.

Good point @Barry

Hi Nathalie, I’ve had the red swelling on cheeks and nose, this comes and goes and, like you, it had eased off when I was well enough to go to my GP. I do get tremor like jerks when I’m passed my limit. Also, usually in bed, I can get random more intense jerks. I don’t get the ring shaped...

That’s an idea. Surely by now funding bodies must realise it’d make more sense to fund biomedical (substantially) research. Why keep throwing money away with BPS research.

I have had sinus issues for around thirteen years. I’ll get a bit of respite and then it’ll flare again...often allergy induced. I often get migraine and TMJ triggered by sinuses too.

I look forward to a day when a high profile clinical trial with substantial funding is biomedical. When I read of trials such as FITNET and SMILE (can you actually believe that was taken seriously) and (the famous) PACE trial I have a feeling that I’m in a very bad dream, or in a parallel...

It would be good if AfME would give full and thorough answers to the questions that they have been asked on this thread.

I really find AfME disappointing.

My cautious optimism is more than cautious now, but I can’t think of the word. I am disappointed to learn of the FND stuff that Neil Harrison is undertaking. I’ve had ME 12 years now. I held onto hope that I’d see solid biomedical research, subsequent diagnostic tests and pharmaceutical...

Cautiously optimistic :) Chris Ponting looks good! Wow, can’t believe EC has gone!

@Gary Burgess that sounds like a plan Great to have you here. Congratulations on your wedding. Take care to rest plenty...don’t push beyond your limits.