Update:
The Scottish Herald newspaper has now published an article about the PACE Trial debate, with comment from Dr Shepherd.
Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
As we have already reported on social media, the ME Association is assisting Carol Monaghan MP, with the Westminster debate on the PACE trial.
The debate will take place in Westminster Hall at the House of Commons on Tuesday 20th February, from 11.00am.
It will be time limited to 30 minutes. Carol will speak for about 10 minutes. Contributions from the floor will last for about for 5 minutes. Finally, there will be a 10-15 minute ministerial (Department of Health).
It seems likely that the debate will be recorded by parliamentary TV and we can either watch it live or watch the recording, but the schedule has yet to posted for this particular week, so we don't know for sure.
Along with infectious diseases consultant Dr William Weir, I had a 90-minute meeting with Carol Monaghan in the House of Commons yesterday (Wednesday 7th December).
We covered the background to, and problems with, the PACE trial in some detail – as well as linking in research into mitochondrial dysfunction, exercise physiology (e.g. the research involving the two-day cardiopulmonary exercise test by Van Ness et al in the USA) and how inappropriate aerobic exercise exacerbates symptoms.
We also covered a wide range of other topical issues relating to ME/CFS. For example, the unique and exceptional problems faced by people with ME/CFS in relation to:
- Lack of medical education leading to late and inaccurate diagnosis – along with absent, inappropriate or even harmful management advice being given as a result.
- Lack of proper multidisciplinary NHS hospital-based services for people with ME/CFS where help is required in relation to either diagnosis or management. Carol is acutely aware of this problem in Scotland having visited several severely affected people at home. She has also seen the film Unrest.
- Lack of biomedical research, disparity of research funding compared to other serious medical conditions such as MS, obstacles to researchers getting involved with ME/CFS, and the fact that most biomedical research in the UK has been/is being funded by the charity sector – such as by the ME Association Ramsay Research Fund.
- Medical scepticism or even hostility about the nature and seriousness of the illness – again leading to problems with DWP benefits, education, employment, social care, child care proceedings etc.
- Failure to investigate promising leads in the treatment of the underlying disease process. Antiviral medication in particular – where Dr Weir gave a short PowerPoint presentation and I spoke about my unsuccessful meeting with Roche pharmaceuticals to fund a UK clinical trial of valganciclovir.
We also covered, for example:
- All the basic stats re ME/CFS – numbers, severe ME/CFS, children and young people and cost to the UK economy.
- Problems of the current NICE guideline and the plans for its replacement.
Carol Monaghan also now has a copy of the ME Association guide to key clinical issues!
What can you do?
You can provide Carol Monaghan with information about your personal experiences of graded exercise therapy, cognitive behavioural therapy, or of how the PACE trial and its media coverage etc. may have affected you or your treatment.
Please contact her by email: carol.monaghan.mp@parliament.uk in advance of the Westminster Hall debate on February 20th.
You can also write or email your local MP to invite him/her to attend the debate, or alert them to it via social media. You can obviously highlight personal, local or national issues (as discussed at the briefing) that you want to see aired by your MP – but please note that given the time limitations the number of other contributions from other MPs seems likely to be very small.
How to contact your MP
This site lets you put in your postcode and sets up an email to your MP. You can copy details of debate and ask them to attend: https://www.writetothem.com
What else is happening at Parliament?
Following the very successful screening of Unrest at the Speaker’s Sate Rooms in the House of Commons last year, the ME Association is working with our colleagues on the Forward ME group, Unrest, and #MEAction, in relation to several other parliamentary initiatives. We will share more information with you as soon as we possibly can.