Action for M.E. and NHS Choices News look behind the headline “Exercise and positivity can overcome M.E.”

Action for M.E. responds to the headline as “entirely inaccurate and potentially damaging” and NHS Choices News uncovers what the follow-up study 5 years on from the PACE trial really shows, and more importantly what it doesn’t.

The WHO defines M.E. as a neurological condition and NICE states that “The physical symptoms can be as disabling as multiple sclerosis, systemic lupus erythematosus, rheumatoid arthritis, congestive heart failure and other chronic conditions”. The Institute of Medicine has described it as a “serious, complex, multisystem disease”. There are an estimated 250,000 men, women and children in the UK with the debilitating condition and 17 million sufferers worldwide. Approximately 1 in 4 people with M.E., including children, are so ill that they are housebound by the illness. You can read more about severe M.E. here.

Today’s NHS Choices Behind the Headlines article examines the conclusions drawn by both the newspapers and the study itself have been examined by NHS Choices here. There are particularly good points about the validity of the assumptions made from the study under “How did the researchers interpret the results?” and in their conclusion, such as “It could simply mean these people got better with time, or symptoms settled down from being very bad after 2yrs”.

Action for M.E. CEO, Sonya Chowdhury, was on the Victoria Derbyshire show today, commenting on the misleading headlines about M.E. that have been in some papers. You can watch this in the video below. She was also on BBC Radio Bristol, which you can listen to again at www.bbc.co.uk/programmes/p034rf7h (around 2h 46m in), plus LBC Radio on Shelagh Fogarty’s afternoon show.

Action for M.E.’s responded to the media headlines as soon as they appeared on social media at midnight last night:

The headline – “Exercise and positivity ‘can overcome M.E.’” – appearing in the first edition of today (Wednesday’s) Daily Telegraph is entirely inaccurate and potentially damaging.

The article itself – an image of which (too small to read the article in full) was tweeted two hours ago, thereby breaking the embargo placed on the story – refers to the latest paper published on the PACE trial in the journal Lancet Psychiatry. The paper itself reports findings from the long-term follow-up of people that took part in the PACE trial (which concluded more than five years ago), and indicates that the management approaches cognitive behavioural therapy (CBT) and graded exercise therapy (GET) tested in the trial were of some benefit to a proportion of participants.

This is not the same as being recovered; it identifies an improvement for those patients that undertook CBT and GET over and above any benefit of standard medical care alone (14-16% improvement), which included advice on self-management.

Several large surveys of M.E. patients by M.E. organisations showed that some patients reported that GET and, to a lesser extent CBT, caused them harm and were only helpful for a smaller proportion of people than the majority participating.

To refer to these approaches, as the Telegraph has done, as “exercise” and “positivity” is at best misleading and at worst insulting to all those with living with the disabling symptoms of M.E. not least the 25% of people with severe M.E. who were not included in this trial and for which there is no evidence base in relation to treatment or management of this very severe, disabling illness.

You can read this latest PACE research paper at www.thelancet.com/…/artic…/PIIS2215-0366(15)00317-X/abstract

Our CEO Sonya Chowdhury says, “This research paper reports that in this study, some participants who had CBT and GET had maintained their improvement more than two years after taking part in the PACE trial. It also reported that participants who had originally been given standard medical care or adaptive pacing therapy appeared to be doing as well in the longer term as those who had CBT or GET as part of the trial.

“It’s clear that, although the management approaches tested in the trial were of some benefit to a proportion of participants, it was not of benefit to others. This research paper did not indicate that all that is needed is exercise and positivity; this is a significant insult to the 250,000 people in the UK who often experience dire injustice, ignorance and neglect. Considerably more research is needed to investigate the biology of M.E. and effective treatments to meet the range and severity of symptoms that people experience with this illness.”

The UK CFS/M.E. Research Collaborative is taking this forward, with Chair Stephen Holgate announcing its ‘Grand Challenge’ for researchers at last month’s annual conference in Newcastle, attended by people with M.E., carers and professionals.

Sonya adds, “The Collaborative offers an exceptional opportunity for clinicians and researchers, and those living with the complex and challenging symptoms of M.E., to discuss how we can work together to move things forward and overcome such damaging generalisations such as the one reported today.”

Action for M.E. is contacting the Daily Telegraph and we will give an update when we are in a position to do so.

Please check out the Our Stories section of my blog to read a collection of personal blog posts about our experiences as patients and how myalgic encephalomyelitis affects our lives. Watch Action for M.E.’s video below for more information about the illness. Please consider donating to the charity by texting EBME99 £3/£5/£10 to 70070 or visiting my JustGiving page.

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