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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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This MRC funded study hopes to develop 'new therapies' in relation to sleep disturbances - putting the cart before the horse by positioning sleep disturbance as a cause rather than an effect of ME. Another study by a psychiatrist given the ring fenced MRC/ME funds:
Can enhancing slow wave sleep SWS improve daytime function in patients with CFS?
Principal investigator: Professor David Nutt
Institution: Imperial College London
Summary: Researchers will study sleep disturbance a core symptom of CFS/ME. Experts in CFS/ME, sleep and psychopharmacology will use a drug to increase deep restorative sleep in CFS/ME patients and measure the effect on their brain function during waking hours. It is hoped the research will increase their understanding of how sleep disturbance affects CFS/ME sufferers, with a view to developing new therapies.
We've already gone round the mulberry bush with studies on 'CFS' and antidepressants - this study will use sleeping medication.
As I already said - its putting the cart before the horse to have the objective of "better therapies" to address sleep problems without addressing the central cause of the disease.
Great news Bob, I've waited 12 years !. New CEO AFME hard at work now in a really constructive and collaborative way. All I can say is at last. !
We also had the news recently (on Facebook) that a UK immunologist who applied to the MRC for funding a Rituximab was turned down. He was quoted by a patient as saying that the MRC is still dominated by the psych lobby.
The proof is in the pudding as they say.