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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Transparency between Laboratories and patients

ChrisD

Senior Member
Messages
472
Location
East Sussex
Every day I sign into Phoenix Rising and Twitter in the hope of seeing great news about developments in ME research, either to be disappointed or pleasantly surprised - but mostly the former. I'm aware that there is work going on at Stanford/OMF, Columbia, Cornell, Griffith (Aus), Norway and probably many others but it would be really nice to know what kind of progress is being made.

Wouldn't it be great if a bit like a technological development roadmap that outlines key dates and plans, we had something like that for medical research to know where everyone is at? I certainly understand that there is only so much that can be disclosed and labs only want to confirm findings once they are sure of them, but a bit of transparency would do wonders for the community in terms of hope and motivation.

For example, the discovery that Activin B (I think in Aus) could be a biomarker for CFS diagnosis was promising for clinical care of ME, but now all has gone quiet on that front and it is just a case of waiting in the dark until the next update. Even then, we don't necessarily know if they are still working on this or if they have the correct funding and so on.

Does anyone know where I am coming from on this?