CFS, ME, WTF

“CONCLUSIONS AND RECOMMENDATIONS

Cognitive Behavioural Therapy (CBT) We conclude that CBT in its current delivered form should not be recommended as a primary intervention for people with ME/CFS.

... Our results indicate that graded exercise therapy should form no part of any activity management advice employed in the delivery of CBT, as this also led to a negative impact on outcomes.

... However, our results did indicate that, when used appropriately, the practical coping component of CBT can have a positive effect in helping some patients come to terms with their diagnosis and adapt their lives to best accommodate it.

Graded Exercise Therapy (GET) We conclude that GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS.

... The other major factor contributing to worsening symptoms was the incorrect belief held by some practitioners that ME/CFS is a psychological condition leading to erroneous advice that exercise could overcome the illness if only patients would ‘push through’.

”4 BALANCING ACTIVITY AND REST

Pacing is the form of activity/energy management that is favoured by the vast majority of people with ME/CFS and this needs to take account of stage, severity and variability of ME/CFS.  Activity management also needs to cover emotional and mental energy.“

“5  DEALING WITH EMOTIONAL AND MENTAL HEALTH ISSUES As with any chronic debilitating condition, some people with ME/CFS will go on develop mental health problems, including clinical depression during the course of their illness.“

“6  EMPLOYMENT AND EDUCATION Dr Shepherd referred to the fact that ME/CFS is covered by both the Disability Discrimination Act and the 2010 Equality Act. Both of these have important implications for modification to hours, duties, etc.“

“7 STATE BENEFITS ... People with ME/CFS should appeal if an ESA or PIP application is refused because there is a high rate of success on appeal.The MEA has detailed guidance on how to fill in ESA and PIP paperwork.

In addition, people with ME/CFS are eligible to claim a Blue Badge if they meet the mobility criteria. Unfortunately, government guidance to local councils is often misinterpreted to mean that they cannot grant a Blue Badge to people with ME/CFS.“

“8  SOCIAL CARE AND SUPPORT People with severe ME/CFS are often entitled to social care but are not receiving a social care package.”

“The PACE trial concluded that GET is safe with few adverse effects (please note the trial did not include those who are severely affected by M.E.).

However, surveys carried out by Action for M.E. and other patient groups suggest that graded activity/exercise may sometimes be harmful, perhaps if they are delivered inappropriately.