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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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ME / CFS is a vote winner

R

rich f

Messages
3
Hello all,

I am a very new sufferer (less than 18 months), and new to this site. My post may well have been discussed in the past. If so, please ignore
................

There is not much going in our favour for those of us who have this horrible illness. However, we do have one thing that we are fortunate to have – strength in numbers and voting power. In the UK there are around 250,000 sufferers(and I am sure there are many millions around the world). Assuming each sufferer has 4 close relatives / friends, then we have over 1 million voters who may well be swayed into voting for a party that increases funding for ME research.

The various political parties should be interested for 2 main reasons.

1: A potential increase of 1 million voters
2: It would cost very little. Even if they announced an increase in funding of just 5% of that spent on other major diseases it would be a massive boost for us.

I suggest that we all push this message to our local political leaders (MPs in UK). We need to sell the message that this is an easy win for a political party. I have already emailed and written to mine.

To find your local MP in the UK see:

http://www.parliament.uk/mps-lords-and-offices/mps/

For those around the world please do the same.
 
G

golden

Senior Member
Messages
1,831
If I was to specifically vote for a party on its M.E./C.F.S. manifesto - I would want an awful lot more than 5% research.

That doesnt even go near it.

Plus there would need to be immediate changes in the system to stop the abuse of M.E. C.F.S. patients that is currently taking place.
 
ukxmrv

ukxmrv

Senior Member
Messages
4,413
Location
London
Hi Rich, do you know about the APPG on ME in Parliament?

If patients contact their MP it might be a good idea to ask them to join the APPG and use that to communicate their patient voice there. I'm not advocating the APPG as being a solution but as patients themselves are banned it would be useful for MP's to join and ask the difficult questions there that we patients cannot do.

Personally I wouldn't contact my MP and ask for 5% extra funding as it is most likely going to go straight into the pockets of Peter White et al.

If we patients were to campaign on this I'd like to see a more specific demand.
 
peggy-sue

peggy-sue

Senior Member
Messages
2,623
Location
Scotland
Nothing would ever persuade me to vote tory or "new" labour, or lib-dem.

Sorry. Voting is far too important to mix it up with allowing certain parties in, on the grounds of one thing I personally would like.
 
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