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Please can you help? My daughter (early 30s) has been ill with ME/CFS and Pots for about 15 years, gradually deteriorating and mostly housebound. In the past she has been seen by the local clinic – tried pacing, graded activity and positive thinking, but no improvement. Currently she is not able to do any activity, mostly in bed listening to audio books, but sitting up for short periods. Seeing friends (even for 5 mins) causes a flare up and then she is in so much pain she can hardly sit up. At the moment she doesn’t feel well enough to see the GP (he will visit and has been helpful but I think he’s out of ideas). Is there any hope of an improvement? Reading accounts of the deaths of Emily, Sophia and Lynn is rather worrying.

Thanks for posting the very well written review by Simon McGrath - it's well worth reading.

As you say, this sort of news gives hope to people in that a number of important initiatives are taking place in regard to research - not only in helping to understand the underlying disease process, and separating out the various subgroups that come under the ME/CFS umbrella, but also the fact that clinical trials are taking place involving drugs like Rituximab that are aimed at the underlying disease process rather than just trying to deal with symptoms

Elizabeth - I'm sorry to hear that your daughter is so unwell and not really making any progress

You seem to have tried everything that can be done re management and it's difficult to know what else to suggest from the purely medical point of view. You have probably seen that we have been discussing the management of POTS (postural orthostatic tachycardia syndrome) elsewhere on this forum.

Thank you to Dr Shepherd and to Cornwall13 - I'll look up the websites later.

The MEA Ramsay Research Fund has currently raised around £60,000 to help fund a UK clinical trial for Rituximab

The feasibility of carrying out such a study is currently being done by Professor Jo Edwards and team at University College London - where the ME Biobank (which collects and stores blood samples for research) is also situated.

ME Biobank at UCL:

http://www.lshtm.ac.uk/itd/crd/research ... fsbiobank/

ME Biobank at UCL:

http://www.lshtm.ac.uk/itd/crd/research ... fsbiobank/

NIH awards £1million grant to UK ME Biobank:

http://blogs.lshtm.ac.uk/news/2013/06/2 ... ion-grant/