United Kingdom: ME Association news

Who knows?

 

This is very interesting nugget that has been uncovered. So many people try this strategy of a different surrounding might positively effect their ME and it rarely does anything. Barry Sheene did this moving to Queensland and it did nothing for his physical state. You have to wonder if people have a full blown post infective state and at some point in the first 18 months it clicks off and then people didn’t have ME/CFS at all in reality.

 

In the earlier stages of my ME at a time when I was mild I did find an improvement when I was on holiday, though it was hard to say if this was just doing less in a relaxing environment with meals being provided rather than any actual change in my ME. Always any subjective sense of improvement did not long survive returning to every day life.

I do know of one more dramatic example of a friend who had a holiday on a Greek island and felt so well that after the holiday she left her job and her home and sold up everything to raise enough money to return to the island for six months. Like me this was in the first few years of her ME. It seemed an amazing success and at the end of the six months she believed her self recovered. However on returning home and getting a locum job within two weeks the ME symptoms returned with a vengeance leaving her unable to work and with no assets and no access to employment rights or possible ill health retirement, with what money that was in her pension pot trapped for thirty years till she reach pension age.

Such anecdotes are interesting but unhelpful in planning how to deal with a real life illness, indeed as in the case of my friend they could result in individuals being significantly disadvantaged.

 

I had a year or two of spontaneous recovery apropos of nothing, then started to deteriorate repeatedly until the big one I’ve never recovered from. I’m quite glad it happened when I wasn’t doing anything different that I could peg it to.

 

I briefly spoke to him and from what I remember he felt a little better on cold baths and a few other more specific things but I don’t remember him saying he was cured but it was a long long time ago and I can’t be sure.

 

Maybe it has not occurred to Caroline and others at the MEA that a very large number of sensible physicians are likely to agree that the patients' petition is entirely justified. Maybe the ME has never realised that the organisation itself is probably regarded by the medical profession much in the way it regards the patient community - as a group of self-appointed ill-informed meddlers ultimately likely to do more harm than good.

The irony is that Charles Shepherd has achieved a lot, but the rest of the organisation has made itself a laughing stock.