Saturday, February 19, 2011

PACE Disgrace

Not surprising that I am doing the Night Watch, with all the crap in the news about PACE trials and their bogus findings in favour of Graded Exercise Therapy and Cognitive Behaviour Therapy for people with "CFS/ME". Where to begin to take issue? Action for M.E. and the M.E. Association have clearly spoken against these findings and concern has been expressed about the way in which the results are being reported in media headlines as it is bound to lead some doctors to advise inappropriate exercise regimes that will cause a serious relapse.

This is not a good day for people with ME/CFS.
They have a complex multisystem illness that requires a range of treatment options based on their individual symptoms as well as the stage and severity of their illness.

(Dr. Charles Shepherd, Hon Medical Advisor at the MEA)

Interestingly, the subjects chosen had to name fatigue or lack of energy as their main problem in order to qualify. This should already sound loud alarm bells because, as any PWME fule know, fatigue and lack of energy is only one of the symptoms - and is almost certainly not the most serious one! How much longer do we have to shout this out?

Or did they just choose people with post-viral or other fatigue-related conditions?
Or did they decide not to discriminate between those and people with M.E.?

I have barely been able to crawl up the stairs recently. But that is not the point. Sometimes I walk for forty five minutes at a stretch, sometimes I swim - yes, last year I conducted my very own graded exercise experiment. Findings? If you have M.E. and do aerobic exercise you are playing with fire. I knew this, but. The point is that even when I am able to walk and swim I have symptoms that make it impossible for me to go out to work and do things in the house most people who can walk and swim would take for granted. As I have so often said: I am one of the lucky ones, only moderately afflicted, but - I am daily in pain, have muscle spasms and take prescription medicine for that and for autoimmune malfunction affecting my eyes, thyroid and liver, suffer a clutch of bewildering symptoms and sensitivities (to certain kinds of light, noise, smells) that have constantly to be monitored and accommodated - this is down to having an incurable (at time of posting) neurological disease and no amount of CBT or GET is going to address that particular issue.

Thank goodness for this response by Professor Malcolm Hooper.

Five million smackeroos of tax-payers' money was spent on the PACE shenananigans. Why? The simple answer would be to say that in the long run it will save money. I suspect there are other darker, more complex reasons also, but for the moment the simple one may be enough and, as Professor Hooper has pointed out, "Professor White and his co-Principal Investigators all have financial links with the health insurance industry..."

Tired now.

p.s. And excuse me but - "fatigue" is not a word that represents the terrifying (do I use qualifying words for no reason?) malaise and exhaustion that all PWME have to negotiate to a greater or lesser degree.

I have spoken.


Anna MR said...

Signs - what to say. It is of no practical use, help or assistance, it doesn't further any campaign for justice, but I share your anger and outrage, as an outsider who has listened to those on the inside who know.



Cusp said...

Well I shan't bother to write a post about this because you just said it all for me. How much MORE pissed off could we all be ?

Fire Bird said...

sorry to hear this

Reading the Signs said...

Anna, believe me it is good, and surprisingly rare, to feel the comradeship and empathy of an "outsider". Thank you.

Cusp, hi pal - yes indeed. I've added an extra line about "fatigue."

Fire Bird, thanks.

trousers said...

Would wish to echo what Ms MR says above (hi Anna, hope you are well). I saw the Guardian's report on this and though, "oh, shit".

Reading the Signs said...

Trousers, it's good to know that you had that initial "oh shit" response. And as I said to her Annaship, it does help to know that there are others out there who do in some measure stand by us.

nmj said...

PACE trial is an absolute disgrace and interesting that Action for ME are so against the findings as they actually supported the trial in the first place when everyone else wanted it scrapped. There is a petition to sign for those who feel strongly, which I think all of us do.

Reading the Signs said...

I had not realised this - but have now signed the petition.

Beth said...

Well put - you have spoken for ME - thank you. We have gone back years with this trial and the reporting of it in the press, if one more person tells me all I need to is "do more" or "try some exercise to get better" ... I despair!