Talk:Action for ME

Updates needed

 * 1) Update info Dave Tuller blog referred to as a blog he might write which is linked to further down page  - https://www.virology.ws/2019/01/23/trial-by-error-action-for-mes-employment-advice/
 * 2) Add Action for ME apology for PACE dates August 29, 2018, and the fact it was deleted later and update the page (which currently says they refused to apologize) - linked to further down page already - https://web.archive.org/web/20180829192602/https://www.actionforme.org.uk/news/pace-trial-and-behavioural-treatments-for-me/

Sonya Chowdhury, our Chief Executive since September 2012, says: “By having a role on the Steering Committee and Management Group, there was a de facto endorsement of the use of £5m of research funding to focus on behavioural treatments. Neither I nor the current Board of Trustees would agree to do this now, as reflected by our current research strategy, the focus of which is collaborative biomedical research.

“I am sorry that the charity did not advocate for this considerable level of funding to be invested in biomedical research instead. It was never our intention to contribute to any stigma or misunderstanding about the illness and I sincerely apologise to those who feel that, in not speaking out sooner and more strongly, we have caused harm.

“Our position on recommending treatment and management approaches for M.E. is set out below and, over the coming months, we will review all our printed and online information to reflect this. This is no small task, but one that the team will prioritise and complete as quickly and comprehensively as we can.

“We will learn from our past mistakes. We will continue to provide practical support to our Supporting Members and others with M.E., to challenge the stigma and neglect they experience, and work with professionals and policy-makers to transform the lives of children, young people and adults with M.E. in the future.”

A summary of our position

Action for M.E. does not support any treatment approach:

based on the deconditioning hypothesis in which patients’ legitimate concerns about the consequences of exercise are dismissed or ignored. We fully support treatment approaches which:

- aim to reduce and stabilise symptoms before any appropriate increase in activity levels is attempted - put the person with M.E./CFS in charge of the aims and goals of the overall management plan.

.. “However, in practice, the term pacing is used differently by different groups of people. One understanding of its meaning is as adaptive pacing therapy, which is facilitated by healthcare professionals, in which people with CFS/ME use an energy management strategy to monitor and plan their activity, with the aim of balancing rest and activity to avoid exacerbations of fatigue and other symptoms.

“Another understanding is that pacing is a self-management strategy, without specific intervention from a healthcare professional. People with CFS/ME generally support this approach.”

In its guidance on therapy and symptom management, the British Association for CFS/M.E. does not refer to APT and/or pacing. Instead, it offers “pragmatic recommendations from experienced clinicians to guide practice when seeing adults with CFS/M.E., where specialist CFS/M.E. CBT and GET therapists are not available/appropriate […] Evidence-based therapies emphasize a therapeutic relationship that enables a graded increase in activity and a process to explore barriers to this increase.”

According to BACME, specialist NHS M.E./CFS services should advocate collaborative work, patient-led goals and support to stabilise physiological patterns of rest, sleep, movement and diet. At the same time, psychological/emotional support should be offered, aimed at supporting patients to come to terms with being diagnosed and/or living with the condition, and to understand the factors and behaviours (eg. doing too much) that jeopardises that stabilisation.

We fully support this approach, and would add that:

“this is best achieved through pacing that utilizes energy conservation techniques mindful of heart rate limits. Only then can careful training of the anaerobic energy system, (ie, improving the body’s tolerance for and ability to clear lactate while increasing ATP in resting muscle) be initiated.” (Van Ness et al, Workwell Foundation, May 2018) “healthcare professionals should recognise that the person with CFS/ME is in charge of the aims and goals of the overall management plan. The pace of progression throughout the course of any intervention should be mutually agreed.” (NICE guideline for M.E./CFS, 2007)


 * 1) Add info on Action for ME changing their employment advice, as a result of Dave Tuller's blog above. See ref already linked to on page -
 * 2) Update about them giving a grant from a donation for children to Esther Crawley then reversing the decision.
 * 3) Add to Esther Crawley section that she is no longer on the board https://www.actionforme.org.uk/news/%E2%80%8Bcmrc-update-new-purpose,-objectives-and-values/
 * 4) Add new board members as per link above including Chris Ponting