Explaining CFS/ME to people?

[ChrisofCabra]

This can be far from easy, and "But you don't look ill " is a frustrating comment, to put it mildly.

Does anyone have preferred methods or suggestions for communicating the key features of CFS/ME to people who don't "get it" and not infrequently have wrong ideas firmly lodged in place?

"The Spoon Theory" is often recommended, and I have had some success with a visual aid, made when I was not so affected, but other ideas analogies or illustrations would be much appreciated.



If felt useful, this picture may be copied.
http://i644.photobucket.com/albums/uu17 ... s2text.jpg

Chris.

[Dr Charles Shepherd]

Thanks Chris

Good idea!

I often use the link to a flat (Duracell) battery when explaining the problem with exercise induced muscle fatigue and muscle mitochondrial dysfunction (the flat battery) to both doctors and people with ME/CFS.

Would it be possible to add ME (as well as CFS) to your poster?

And maybe you could also add a brief scientific explanation as to why people with ME/CFS have muscle batteries that quickly go flat and don't recharge very quickly?

[ChrisofCabra]

Thank you.

I only had it in mind as a postcard: I know one or two friends carry it that size or little smaller, laminated.

If I post a link to the picture without text, people could choose and add their own. H/w:
http://i644.photobucket.com/albums/uu17 ... n/cfs2.jpg

I considered using ( CFS/ME ) but that didn't seem so attention-demanding and adding Myalgic Encephalomyelitis did make it look a bit crowded at the size I had in mind.
Let me have a rest and a think and I'll see if can come up with something.

Chris.

"And maybe you could also add a brief scientific explanation as to why people with ME/CFS have muscle batteries that quickly go flat and don't recharge very quickly?"

Do we know for sure?
"Is that the cycle repair shop? I've got a Krebs cycle that doesn't work.properly."

I'm afraid I don't buy into "my perception of fatigue has increased so I don't like doing much."
(Whoah, controversy!)