Daily Archives: September 2, 2012

PHANU in Australia there is a real hope for ME/CFS and even FM sufferers.

ME/CFS research around the world is pretty spotty. The US and the UK are long-time hubs, with Canada coming on in the last few years.  Outside of the Nijs/DeMeirleir work in the Netherlands/Belgium, you can scratch out most of Europe.  South of the equator, the picture is bleak until you get to Australia: things are definitely happening “Down Under”.

The full articles are HERE and HERE – talking about Rituximab and bio-markers

I was particularly interested to see that there will be some research into how pregnancy works in ME/Cfs.

I think Dr.Marshall-Gradisnuk was not as concrete about the hope for another Rituximab trial but at least the question is on the table. Thankfully there are other Rituximab trials continuing in America and the Netherlands. I am beginning to think that Rituximab may be our first port of call, rather than Ampilgen, if for no other reason than it’s a bit cheaper.

Even if Ampligen is approved by the FDA in America I can’t see NICE accepting it here. Stamping on the egos of the Wessley school to allow such a treatment would probably preclude it, and anyway, the NHS would never agree to pay for it.

But at least wealthier patients may have the hope of a full remission if they can pay for these drugs. In Canada the Ampligen trial has to be paid for by the patient. (How that works for the placebo I don’t know – if they survive the trial do they get their money back?)

It’s good to see some hope at any rate.

If you are interested in watching the progress of a patient taking part in a Rituximab trial THIS BLOG gives her experience as it is happening.