Sunday, 11 September 2016

Like being in a boxing match

I'm very prone to post-cold coughs that go on forever - possibly because I have chronic sinusitis (from over-using mothballs years ago) and I can't use steroidal decongestant sprays  because of my eyes - but this has to have been the worst, almost five weeks of coughing. I had a vile summer cold beginning of July, that came and went, then a few weeks later I developed a cough from nowhere. Three lots of antibiotics and now an inhaler (which I think is helping, though I had to get a spacer, I just couldn't use it properly, all new territory for me). I am coughing much less now, but my poor ribs are still battered after more than four weeks of coughing and it feels like I am boxing myself whenever I cough or breathe deeply - the pain is so sharp and sudden. If I feel I am going to cough I have to clutch a pillow to my chest to try and cushion the blow. And even when not coughing, it can feel like having a clamp round your heart. I'm entirely used to back pain and am necking prescription painkillers (plus Ibuprofen) I use for my back for my ribs. I was hugely relieved that I got through my six-monthly eye check-up on Monday without coughing.


The  razamatazz and spin of the PACE trial saga has also felt a bit like a boxing match.  After spending £250 000 to prevent the recovery data from being released - QMUL are finally releasing the data,  a result, of course, of the recent tribunal. There has been, understandably, celebration and much anticipation on social media: the narrative of harmful nonsense has finally been toppled.

This graph (by Simon McGrath) represents published Lancet data (2011) versus original protocol-specified data (2016): 

The graph is explained more fully  here by Tom Kindlon, an Irish patient, who has worked hard to debunk PACE. Tom has been ill for over twenty years and is housebound as a result of graded exercise therapy (GET). Aside from the appalling anti-science of PACE, it is the narrative of 'mad, bad patients' that has been so galling, as health journalists unquestioningly and sycophantically jumped on the PACE bandwagon, ('cos The Lancet said it, it must be true). The Science Media Centre is certainly culpable for the way it has perpetuated this narrative of 'militant, dangerous ME sufferers':
“Mr Matthees points to press releases from the Science Media Centre, a body working with PACE researchers, to the effect that they were “engineering the coverage” to “frame the narrative” in such a fashion to discredit those with legitimate criticisms as misguided extremists by sensationalising a small number of indefensible actions to the detriment of the vulnerable wider patient ‘community’. This has been highlighted by respected scientists, and clinicians (see p87­90/B7). Rather, no evidence of a ‘silent majority’ in support of the PACE trial has been put forward.”[1]

All ME patients and advocates have much to thank Alem Matthees for, the ME sufferer in Australia, who is currently bedridden from his efforts of challenging PACE. It is unacceptable that someone with ME would have to go through so much in order to get to the truth. I hope the PACE team are  proud of themselves.

Tom Kindlon had this to say, which made me smile.


And thanks to @kafkaboots for telling me about Pierre Bonnard's Le Boxeur, it fits right in with this post:

More of Bonnard here, I love The White Cat too.

1 comment:

carole said...

I'm delighted about the PACE decision and rather hoping that heads will roll. So sorry about your pain, I have been bed bound for over 20 years with this condition, my daughter as well. The only thing that helped me with a persistent cough a couple of years ago was inhilations of tea tree oil, not pleasant but eventually effective.

More serious research going on now, thankful about that.