I have been ill for over 31 years. Myalgic Encephalomyelitis (ME) has taken everything from me: I am 55 and have no one and nothing; I have no memories; I have had no life. I and every patient I know want only one thing: good research.

Many of us are well educated, some with a very strong scientific background. We do challenge researchers and we do ask difficult questions, as is our right. We do not harass anyone, as was established by the Information Tribunal, part of the courts system of England and Wales

We have nothing against psychotherapy. Cognitive Behavioural Therapy (CBT) for ME is not new. It has been around for 25 years at least. Many of us have tried it. Some find it helps in coping with the effects of the illness; some find it helps with the psychological impact of a chronic illness.

But there is not enough evidence to say CBT is an effective treatment for ME, according to the US Agency for Healthcare Research and Quality, at least.

The FINE trial found that there is no evidence CBT makes any difference to those most severely affected by ME. While the PACE trial found no evidence that CBT is effective for the vast majority of even moderately ill patients. Even the slight, subjective, self-reported difference in a few patients dissipated over two years.

No one disputes psychotherapy can help with a broad spectrum of illnesses, but there is no evidence it can reverse organic damage (injury, infection, inflammation). There is no evidence CBT can address the sorts of changes in ME patients found by researchers such as Lipkin, Montoya and Naviaux.

Everyone is aware of the therapeutic illusion: patients desperate to get better and therapists desperate to help often see an effect where none exists. Rigorous scientific trials are needed to ensure interventions really do work.

In trials of psychotherapy there is the added challenge of distinguishing between placebo, improved coping with the effects of the illness and a genuine treatment of the underlying illness. Proper safeguards are needed against this confound.

There is also a particular difficulty with ME since there is no biomarker and we know that 40% of those diagnosed with ME do not in fact have it. Trials which use very broad criteria are likely to include those with fatigue but not ME. These trials do not have the confidence of ME patients and they cannot be compared to international trials using stricter criteria.

Patients do not want anyone to run away. What we want is for all research to use strict criteria to exclude chronic fatigue; to take into account the physiological changes found in people with ME; to include meaningful patient involvement, from the broader patient community not just the established charities; to benefit all patients, including the most severely affected; to have, where applicable, proper controls against confounds; and to share unconditionally all anonymized data with anyone who wants to see it.

Is that too much to ask?

On 17/02/2017 09:11, Nets monitoring wrote:

Dear Mr Peters,

Thank you for your email regarding the FITNET-NHS study. The content within your email was thoroughly reviewed. All applications to the HTA Programme undergo a comprehensive assessment as described in the ‘general assessment criteria’ document available on our website at http://www.nets.nihr.ac.uk/funding. This includes independent peer-review by both professionals and members of the public. We are content the FITNET-NHS trial has met the criteria listed. We are also content the study is accurately following NICE guidelines.

In addition, thank you for highlighting the inability to comment directly to Professor Crawley’s blog on the NIHR website. The NIHR website does not currently have the facility for responses to be made to blog posts. However, if you would like to direct your comments to Professor Crawley, her details are available online.

We are unable to enter into further correspondence on these issues, but we thank you again for voicing your concerns.

Best Wishes,

Nets monitoring