A Westminster Hall debate on the PACE trial has been scheduled for Tuesday, 20th Feb., 11-11:30 a.m. Carol Monaghan MP has secured the debate.

Please urge your MP to attend the Westminster Hall debate to learn about the flawed science behind PACE, and how it has affected policy on Myalgic Encephalomyelitis (ME) in the UK, forming a pervasive perception of ME as a psychological disease that can be cured with graded exercise therapy (GET) and cognitive behavioural therapy (CBT).

The debate will give MPs the chance to hear about the devastating impacts of PACE: how patients continue to report irreparable harm after they followed the recommendation to undergo graded exercise therapy; how the focus on cognitive behaviour therapy has stigmatized people with ME and resulted in a severe underfunding of biomedical research and a lack of healthcare provisions for adult and pediatric patients.

Watch the Debate or Attend the Debate

Activists have drafted a letter that you can personalize and send using the box below. (If the box below is not working, you can find your MP here, and view the sample letter here.)

Step 1: Fill in the fields below and click the “generate” button, a personalised message will be automatically copied to your clipboard, and you will be taken to the website “Write to them” allowing you to email your MP directly.

Step 2: Paste your message into the box, replacing the current text (feel free to change this however you feel is appropriate but please be polite and avoid any temptation of introducing party politics!) There are two {marked sections} in the text to write a little more about yourself.

Step 3: Let us know if you have had a positive response from your MP by contacting [email protected]

Notes:

The information entered here is to create a personalised message only and we do not save any of this information.

Remember you will need to paste the content into the next page. Your Name: Your Postcode I have had Myalgic Encephalomyelitis (ME) since 2018 2017 2016 2015 2014 2013 2012 2011 2010 2009 2008 2007 2006 2005 2004 2003 2002 2001 2000 1999 1998 1997 1996 1995 1994 1993 1992 1991 1990 1989 1988 1987 1986 1985 1984 1983 1982 1981 1980 1979 1978 1977 1976 1975 1974 1973 1972 1971 1970 1969 1968 1967 1966 1965 1964 1963 1962 1961 1960 1959 1958 1957 1956 1955 1954 1953 1952 1951 1950 1949 1948 1947 1946 1945 1944 1943 1942 1941 1940 1939 1938 1937 1936 1935 1934 1933 1932 1931 1930 Generate » Dear [Name of MP], Re: Westminster Hall Debate

PACE trial and its effect on people with ME I, respectfully, urge you to attend the above debate on Tuesday, 20th February, 11-11:30 a.m. I have had Myalgic Encephalomyelitis (ME) since [YearSick]. This means {share a little about how it has impacted your life}. What is PACE? (Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation) – A highly controversial trial for people with Chronic Fatigue Syndrome (ME)

– Funded by the UK Medical Research Council, Department of Health, and, unusually, the Department for Work and Pensions

– The largest trial for people with ME/cfs costing £5 million of public money

– The results claimed the best treatment for people with ME was Graded Exercise Therapy (GET) alongside Cognitive Behavioural Therapy (CBT)

– The results contradicted patients lived experience

– FOI requests to release the data were denied

– QMUL spent £200,000 to prevent the release of the data – overruled by tribunal

– The released data shows the claims were exaggerated

– The design, methodology and results have been heavily criticised [1] – 74 International researchers from a range of disciplines and 29 patient organisations signed a letter [2] for it to be retracted from the Lancet Why does this matter?

Repeated surveys [3] identify half of people with ME are made worse from GET/CBT.

It perpetuates the misconception that ME is a psychological illness. (The WHO classified it as a neurological illness in the 1960’s.)

People are being denied benefits, appropriate care and the focus on GET/CBT has prevented the development of important biological research. For me it has meant {insert how it has affected you}

If you want to understand better how the misconception around this disease has devastated lives, I recommend you watch the award-winning film, Unrest [4], (also available on Netflix). It would mean a lot to me and the 250,000 people estimated to have ME in the UK. I do hope you will support us in attending the debate. Sincerely, [YourName] PS You can also show your support by signing Stephen Timms’ EDM 271 [1] http://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/ [2] http://www.meassociation.org.uk/2017/03/we-call-for-the-retraction-of-the-pace-trial-recovery-paper-open-letter-to-psychological-medicine-13-march-2017/ [3] http://www.meassociation.org.uk/2015/05/23959/ [4] https://www.unrest.film/ [1] http://www.meassociation.org.uk/2017/07/the-pace-trial-the-making-of-a-medical-scandal-29-july-2017/ [2] http://www.meassociation.org.uk/2017/03/we-call-for-the-retraction-of-the-pace-trial-recovery-paper-open-letter-to-psychological-medicine-13-march-2017/ [3] http://www.meassociation.org.uk/2015/05/23959/ [4] https://www.unrest.film/

Actions your MP can take right now!

Once your MP learns about PACE and the neglect of people with ME, there are actions they can take right now. Follow-up with your MP following the Westminster Hall debate, and suggest that they take the following actions right away:

Your MP can act now by signing the EDM (271) NICE Guideline on ME that removes graded exercise therapy (GET) and Cognitive Behavioural Therapy (CBT) from the NICE guidelines on ME.

Encourage your MP to watch the award-winning ME documentary, Unrest, that was shown in the House of Commons, available on Netflix.

Learn more

Read the Parliamentary briefing about the PACE trial here.

Read more about Parliamentary Early Day Motion 271 here.

Read more about the PACE trial here.

Read an article about the politics of ME in the UK here.