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New FITNET trial announced for young people with M.E.

November 02, 2016

The University of Bristol has announced the launch of a new clinical trial, in which more than 700 children and young people with M.E. will take part. The trial will investigate whether FITNET-NHS (an online cognitive behavioural therapy programme) is effective and offers value for money compared to activity management for children with M.E.

Information for parents/carers about the study states that “activity management will work on the total amount of activity done each day, by setting a baseline and trying to increase it over time. FITNET-NHS will try to focus on cognitive behaviour strategies to change cognitive processes which will allow a child to reach a goal which they have set themselves.”

Prof Julia Newton, Action for M.E.’s medical advisor, says: “M.E. is a horrible disease that devastates the lives of adults, but when it affects teenagers and young people it also impacts hugely upon their education and ability to fulfil their potential. It's essential that we have a greater understanding of what causes M.E. and the treatments that are effective. Ensuring that we perform a wide range of research to help us understand the causes and to improve the lives of people with M.E. is vital.”

There has been considerable media coverage of the trial, which began recruiting yesterday, though results are not expected for a number of years. Some coverage has suggested that M.E. leads to “mental health problems and missing school” (BBC news), which considerably underplays the devastating effects of M.E. on children and young people with the condition and their families.

Nor should the inclusion of a psychological therapy in the trial be taken as evidence that M.E. is psychological in origin. It is not. M.E. is a chronic, fluctuating, neurological condition that causes symptoms affecting many body systems. Research shows that people with M.E. score lower overall on health-related quality of life tests than most other chronic conditions.

Action for M.E. does not recommend or endorse any individual treatments or management approaches for people with M.E., but instead provides key information to empower those affected by M.E. to make informed decisions.

CBT is not a cure for M.E. but some people with M.E. tell us it helps them cope with the impact of the illness. In 2014, we surveyed more than 2,000 people with M.E and our resulting M.E. Time to deliver report showed that 33% of respondents had tried CBT and of these, 54% said they found it helpful or very helpful, 34% said it resulted in no change, and 12% said it made them a bit or much worse. However, almost all of those surveyed were adults.

Sonya Chowdhury, Chief Executive, Action for M.E., says, “Media coverage has repeatedly described 63% of patients being cured in the Dutch study, but this is misleading, and fails to take into account the long-term effects of M.E.”

Additionally, it is important to note that there has been no reference to a follow-up study that was undertaken by the Dutch FITNET team. This found that, at long-term follow-up (an average of 2.7 years), there was no difference between the recovery rates for the different treatment strategies (FITNET versus any form of usual care) although recovery, as reported by the study, was eight times slower for those not using the FITNET treatment strategy. The results of the UK study are unlikely to be published for six years.

Following up on coverage of the trial, further stories highlighting the impact of M.E. have been published today in The Times and i newspaper.