Guys, to my best knowedge, Professor Julia Newton (MRC associated Fatigue and POTS researcher in the UK) asked or was proposing for the TILT test to be given to all people with CFS/ME in the UK a as part of the NICE guidelines review and this idea was rejected by NICE. If correct, this is the sort of thing UK patients have to face. That CFS/ME is not allowed to be moderately, never mind strongly, associated to a chronic
neurological disorder (POTS).
We see lots of political games in the UK regarding POTS denial in CFS.
For example, research has demonstrated POTS
is correlated to those with an existing diagnosis of ME CFS, but the NHS website on CFS doesn't discuss POTS!.
Source:
http://www.nhs.uk/conditions/Chronic-fatigue-syndrome/Pages/Introduction.aspx
Equally bad, the 1 page NHS website on POTS, doesn't discuss CFS either!!!
Source:
http://www.nhs.uk/conditions/postural-tachycardia-syndrome/Pages/Introduction.aspx
This means, both conditions (CFS + POTS) don't know each other exists offcially in the public domain and thus the patients remain uninformed and kept more sick than they need to be. Saving the NHS lots of
as the 'CFS' patients don't need any research to explain their autonomic dysfunction, as no one knows many have POTS., so psychological theories can remain, such as being ''fearful'' of exercise, leading to de conditioning tachycardia.
Who benefits from this? We know who. People who want to keep patients in the dark that many with CFS have a neurological illness called POTS, which has a diagnostic screening test, but is not known about or permitted to be given to the vast majoirty of those in the UK with CFS. To me, that is scandalous, as is the fact that Peter White (Trudie Chalder's colleague) was on the BBC Radio 4 in the UK years ago, saying that he'd not give CFS patients a TILT test (that diagnoses POTS) as to do so, would be ''unethical''.
With this level of ignorance about the two conditions, the patients (of many subsets) suffer, and that, is what's so wrong when it's the medical profession who are meant to be optimising patient care by preventing this in the first place!
People in power don't want control of BPS theory CFS wrestled from them as the 'Evidence Based' way to deliver care, as then so many other conditions will rapidly be associate to CFS, namely: POTS, EDS and Chronic Lyme - all physical conditions, which will NOT respond to CBT/GET/Pacing to treat them.
Thus, BPS theory of CFS should not be promoted as 'safe', 'effective' and 'cost effective' as too many people with CFS aren't neurotic, aren't avoiding exercise but cannot exercise due to a multi system disease, not researched and undiagnosed. To keep these patients trapped within a minority subset of psychogenic CFS (that may not even exist) is unethical and wrong, and none of these 'tours' should take place of people travelling around never mentioning the fact that the main ilness within CFS is indeed biological and that CBT/GET failed to treat them.
This such a waste of so many millions of lives with organic ME CFS POTS, when so much better could be done to fund biomedical research in people without Oxford Criteria CFS, arguably, MRC criteria CFS, as they green lighted the PACE trial and wasted £5 million that could have been spent on large scale testing for autonomic dysfunction in people with Fukuda and CCC criteria CFS, to determine a reliable percentage of those with POTS etc.
With the clearly failed single form of management in place (CBT GET) for multi causation syndromes and diseases (ME, CFS), a sub optimal outcome is guaranteed and suffering worsened for those affected by this. This in some cases, can mean patients die of their disease.
The sob stories in the media about vexatious requests, then become even more sad. The medical profession is not meant to cull patients difficult to treat patients, although they have an impressive past history of doing so when psychiatry is the stop or go sign:
In the past, from patients in the UK tied to a chair and given electric shocks to turn them straight on the NHS
Carolyn said: ‘I was taken into a darkened room, strapped to a chair and given electric shock treatment. The strategy was to make me associate what I wanted to be with pain.
'It took me 40 years to stop shivering at the thought of that treatment. People punished me in this way as if it was okay. You would not do that in a prison.
‘But I went along with it because I wanted to be cured and not different and dirty. It was a long time ago. It does not happen in this country now.'
Source:
http://www.dailymail.co.uk/femail/a...tric-shock-therapy-cure-gender-dysphoria.html
...To the present, and forced GET in psychiatric wards which happens to ME CFS sufferers , and the rest of us left disabled (via no treatment due to inappropriate research direction) and thus effectively locked away in the homes unable to stand up or walk, the outcome is ruined lives for
all.
And that's not acceptable in a democracy.
