Progress For The M.E./C.F.S. Community


I’ve been away from work for nearly 2 weeks for the Christmas and New Year period. I had planned on relaxing and recharging my batteries ready for a busy 2019. However, I got a muggle bug (that’s a non-M.E. person virus) and spent 5 days wilting in my bed. Hardly recharging! I am now up and trying to get back to ‘normal’ but still feel extra ‘under the weather’, this bug is definitely an unwelcome lingerer.

I have been keeping an eye on the M.E./C.F.S. community’s news through social media. This blog is about what I see as a worrying trend, I think positivity and optimism are great but in this case, I think it could do more harm than good.

Since starting Foggy, I had noticed that most M.E./C.F.S. patients post about needing research in order to find effective treatments. The language has changed. I’ve noticed a significant increase in the number of people now talking about the need to push for a cure.

Let me be 100% clear. A cure would be absolutely fan-blooming-tastic but I think we are getting a bit too far ahead of ourselves as patients.

The powers that be are still debating what to call our condition, genius scientists (*Foggy* My favourite people) are working very hard to find biomarkers to prove that it is a real physical, biological condition. Initial research is making excellent progress but it’s still not quite there YET. PACE is STILL not dead and buried. Until it is, M.E./C.F.S will never be taken seriously as a physical condition, our reluctance to exercise will be seen as laziness until eternity or until PACE is incinerated, whichever comes first!

We still haven’t made headway with getting significant government research funding, and research is still mainly funded by us, the patient community, and our close-knit support networks. These funds are exhaustive, sooner or later the purse strings will tighten.

I think the change in language is brought about by frustration and is completely understandable. We want change NOW. We are going through a period of change but I feel the impact won’t be felt by the patient community for a while yet.

Remember, we are decades behind the HIV/AIDS community in terms of research and developments. They are still waiting for their cure…..


Sally (and Foggy OBVIOUSLY)