Immediate response from The ME Association to the latest results from the PACE trial | 1 August 2012

In response to the paper published by PlosOne today and the press release issued by the Medical Research Council, The ME Association this evening issued the following press statement:

Dr Charles Shepherd, Hon Medical Adviser to the ME Association, said:

“We have three major problems with these conclusions about the effectiveness of CBT (cognitive behaviour therapy), GET (graded exercise therapy) and pacing.

“Firstly, they do not match the feedback that we consistently receive from people with ME and CFS – where CBT is often found to be ineffective, GET makes the condition worse in around half, and pacing is by far the most effective and acceptable form of treatment

“Secondly, they do not take account of the fact that ME/CFS is a ‘catch all’ label that covers a wide variety of clinical presentations and causes – so it is impossible to conclude that one type of therapy is suitable for all’

“Thirdly, CBT and GET are based on the seriously flawed assumption that there is no underlying pathology present and that symptoms are largely maintained by abnormal illness beliefs and deconditioning/inactivity.

“Consequently, it is neither sensible nor cost effective to recommend that CBT and/or GET should be routinely given to everyone with ME/CFS.

“What we desperately need is research into the underlying biomedical causes of this illness and effective forms of treatment based on this research”

Background note

The MEA has carried out the largest ever survey of management options for ME/CFS – over 4,000 people took part.

Results for CBT

Greatly improved 2.8%

Improved 23.1%

No change 54.6%

Slightly worse 11.6%

Much worse 7.9%

Results for GET

Greatly improved 3.4%

Improved 18.7%

No change 21.4%

Slightly worse 23.4%

Much worse 33.1%

Results for Pacing

Greatly improved 11.6%

Improved 59.6%

No change 24.1%

Slightly worse 3.5%

Much worse 1.2%

The report can be accessed on the MEA website at: www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res4.pdf

The MEA is currently conducting an in-depth survey on the use of CBT, GET and pacing – over 1,100 people have taken part so far. This can also be accessed via the MEA website: www.meassociation.org.uk/?p=11824

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.