I wrote to mine, but let's just say that the chances are somewhat slim.
Same here. I gave it my best though, compiled over several days but hopefully not too long. Just looked and it is quite long though!
"Please would you take the time to attend the above debate on Tuesday, February 20th from 11.00 to 11.30 am at Westminster Hall.
My life has been wrecked by this illness, Myalgic Encephalomyelitis, since 1995, and there is little hope of recovery without urgent,
correct research being undertaken. This has been prevented, for example, by the sham, government-funded, psychiatrically-based PACE Trial, the result of which has been more use of the appalling, damaging 'treatment' Graded Exercise Therapy (GET). All this 'treatment' does is make people worse, often permanently and considerably, rendering them incapable of walking, for example. Some people have been forced to undertake GET or lose all their benefits. Many suffer intense pain. Some, tragically, die, as life becomes unbearable.
Yet it is still recommended by the UK research body NICE, who are, thank goodness, finally reviewing their advice under pressure, but it will take about 2 years. Meanwhile many doctors are still wedded to the seriously-wrong guidelines which have arisen. NICE still say on page
https://www.nice.org.uk/guidance/cg53/chapter/Key-priorities-for-implementation:
"Cognitive behavioural therapy and/or graded exercise therapy should be offered to people with mild or moderate CFS/ME and provided to those who choose these approaches, because currently these are the interventions for which there is the clearest research evidence of benefit."
The film 'Unrest' illustrates the results of GET well, and I recommend that you see it if you have not done yet. It is available on DVD, and is directed by the US ME sufferer Jennifer Brea.
The psychiatric lobby have gained a considerable foothold in this illness, which is entirely inappropriate and causes great harm, as it has done previously in other illnesses before definite physiological evidence was identified and confirmed.
74 international researchers signed this letter:
http://www.meassociation.org.uk/201...tter-to-psychological-medicine-13-march-2017/
requesting the retraction of the Lancet PACE Trial recovery paper on 13 March 2017 - almost a year ago, for falsely reporting outcomes.
I personally wrote to InterAction magazine in 2011 stating:
"(please excuse errors):
I am just skim-read your article about the PACE study on page 4 of the Spring issue of InterAction, and hope that your scientists will be producing a detailed critique of the study.
A very quick look at the main study paper reveals a number of areas which merit question. For example, an overwhelming proportion of people initially approached to participate were excluded, and the expectations of those who did participate appear highly atypical, but concur closely with outcomes. The study sample may have been an overly self-selected sub-group. It is likely, for example, to have excluded people who have previously tried GET and experienced adverse effects, as in your own studies.
Unfortunately I cannot spare the time to analyse the study thoroughly myself without remuneration, being a sufferer myself who is struggling to make ends meet and suffers severe adverse effects from over-exertion."
I received no acknowledgement, let alone a reply. There was no detailed critique.
There are estimated to be 250,000 people in the UK with ME, also known as CFS (chronic fatigue syndrome), and many are some of the most previously capable, hard-working people.
It is vital that everyone possible learn about this illness, and pressurise those responsible to change and implement policy to put the correct facts and guidelines into place and into effect, so that we can have proper research and put an end to the suffering of so many people.
Thanking you in anticipation."
