Carole…

…speaking through art, poetry and humour…oh and politics too!

ill founded and unreliable research in today’s papers.

Today there has been a slurry of articles in the main stream media and they’re all being shared, read and thankfully destroyed across social media. One of my friends Hazel Howard wrote this response to the articles.

There is a link to another blog at the bottom of this post with all links to the articles and some other responses too.

Thank you Hazel for saying and expressing what so many of can’t or are too sick to be able to today.

Another ill-founded unreliable research article on the benefits of exercise in Me/CFS

It is upsetting when these scientists crank up the same tired old drum, and bang out a variation of the same old sorry tune. It’s recognise and picked up by the media and all of a sudden everyone is singing along…… And once again it’s in the popular music charts, subliminally churned out to the masses……….Except for those of us who are chronically sick……this dull repetitive drone…… is pure offensive noise pollution and serves to make us sicker, it hurts. (Bad science hurts us)

You can engineer most research to FIND/CONCLUDE most things as long you as you are seen to be sticking stringently to the rules of academia, (Rules compiled by the academical, hierarchical institution….. revered by them, sustained by them and controlled by them) you could pretty much conclude the moon was blue.

Confirmation bias (a type of cognitive bias; ironically) is highlighted and mitigated for…… or is it??? (If you always do what you’ve always done? you’ll always get what you’ve always got; springs to mind here)

Tragically this misguided research glides through because it seemingly follows rigours rules….. but also because it is a continuum from previous (pace) ‘ME/CFS bashing’ research….. It’s accepted by journals, it gets peer reviewed as some kind of ‘rite of passage.’ Yet we hear Dr Montoya and other imminent ME/CFS doctors and researchers in the field highlight how difficult it is to get any ME/CFS research into a journal. Getting funding for any such ME/CFS research is even more elusive. And because of this tragically for our patient community many researchers and medical professionals feel unable to bring fresh and honest evidence for fear of destroying their own career.

Cognitive behavioural therapy (CBT) “as prescribed-is what it says on the tin, it is prescriptive!! It is just another person’s perspective/view. A person with no ‘lived in’ experience) on what they think is best for our individual illness. Its aim is to change our beliefs (to theirs!!) Cognitive Behavioural Therapy does NOT foster autonomy. Well….it does if only you’ll change your false illness beliefs and stop avoiding the gardening, going to the gym and that holiday of a lifetime you’re just shirking.

I (with a psychology and research background) am not in the least bit frightened of “Movement” on the contrary I yearn-crave to be up-and-about. Of course I test the boundaries like most of my M.E. companions ……. and we learn from and share our mistakes. Experimental good lived-in research!!!!! This is what Cognitive Behaviourist call, “Weighing up the pros and cons,” we consider the advantages and disadvantages and we learn from each other. We share techniques, support and encourage each other and feed-back. Most importantly this is NOT STATIC; we are constantly updating and trying new ideas. The best and truest form of ‘cognitive fluency.’

The ME/CFS patient group is a diverse, intelligent and highly motivated community. We have at our disposal access to more current (and historical) research than most scientific researchers would include in any study. Collectively we are privy to far larger, more holistic, universally rounded approaches i.e. Supplements, protocols, psychological, physiological, diet, complimentary, massage, osteopathy, chiropractic, cranial, spiritual, (the list is endless)

As a patient group, we do not set out to prove or disprove hypotheses for professional gain. Our aim is to get well!! Thus we have our lives and indeed our quality of lives invested in it.

Because we are not confined to a strict set of rules and we encompass so many individuals with differing opinions, abilities and backgrounds we have the flexibility to highlight biases. Therefore, on the strength of our own conclusion we can make autonomous decisions and judgements that fit with our symptoms and limitation (within our chronic illnesses) to the very best of our ability. And we can update and change accordingly, whilst………..

………….the rest of the medical world and the Doctors and real scientists who are truly working for us, are allowed to catch up with real science and bio-medical research, which one day will help us get the treatment (and humanity) that we truly deserve.

May I also point you towards this excellent blog post which has the links to all the articles that this is referring to…
https://guj30.wordpress.com/2015/01/14/the-medias-inaccurate-and-biased-reporting-of-me/

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Written by carolecarrick

January 14, 2015 at 3:19 pm

Posted in Uncategorized

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