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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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UK - ME research UK are calling for patient feedback about direction and communications & A range of volunteers too


Senior Member
I filled it in. Quite a lot of scope for giving opinion and in the UK this is quite rare opportunity to give feedback so why not take it. I called for more vibrancy, innovation and radicalism but as a solely research charity perhaps the latter has Limits.

meruk are currently funding some good research, around the world, and are looking for people to volunteer on their board of trustees too.


they are also calling for ambassadors and Fundraising Champions.

I think that this is a welcome move to being more proactive, more engaged and more aspirational, they say
As we go into our 20th year working to end the suffering caused by ME, we want to fund more biomedical research than ever before. We also want to raise awareness of ME and our work to a wider audience.

We need your help to do this. We are looking for more volunteers who can help us with awareness-raising activities, and help others to raise funds for our cause.

i like the emphasis on suffering. Please click link for more details.

I think that trying To get the involved community onboard with increased fundraising efforts is a good idea.
The question is after their more conservative approach to date are they going to have support to transform.
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