I REFER to the article about the dreadfully debilitating symptoms that Libby Meyers (‘Left to rot’, Echo, November 27) has endured for longer than a decade.

That makes it highly likely that she has severe Myalgic Encephalomyelitis (ME), which is, contrary to the commonly held belief, not at all the same as Chronic Fatigue Syndrome (CFS).

It is questionable whether the treatment, which is a mixture of Cognitive Behaviour Therapy (CBT and Graded Exercise Therapy (GET), offered at The Chronic Fatigue Syndrome Unit at Queen’s Hospital in Essex (and, indeed, around the UK at 12 similar clinics), is beneficial even for people with chronic fatigue.

Some of these patients would have got better with lifestyle changes or, in time, with the body’s natural defences, without any additional treatment and the unwarranted mixing of CFS/ME makes the statistics unfathomable, since ME sufferers are unlikely to be included in the claims for success.

We do know, however, that all research shows that CBT is ineffective, without relapse, for people with ME and GET makes a majority worse (Twisk and Maes, 2009).

Even those who advocate or administer these treatments admit this; yet, astonishingly, they recommend extending the service.

So, it would not seem advisable for Libby – or any ME sufferer – to have this treatment at Essex or anywhere else but it is also intolerable that she is left without any help apart from her loving family, without whom she would be abandoned alone.

Deplorably, Libby is far from alone being ‘left to rot’. At the lowest estimate, from government statistics, we reckon that there must be more than one patient as severely affected as Libby in every geographical area, not only in the UK but around the world, which makes this not only a national disgrace but an international scandal.

ME sufferers have remained hidden away, housebound or bedridden, for one very obvious reason: that they are too ill to speak out for themselves.

Many remain invisible because they fear consequences, including derision, disbelief, even being hospitalised in psychiatric wards against their wishes and so stay under the covers.

It would be best if we could find ME sufferers prepared to be interviewed for their local newspapers, just as Libby as done but, if they are too frightened to speak for themselves, we can find ‘under covers agents’ to do it for them.

We believe that this neglect is of such a magnitude that there will be at least one ME sufferer in the readership area of every newspaper in the world and it is our goal to reach them and make it a principal project for International ME Awareness Day, next May.

If anyone can help, please email us at drjohngreensmith@mefreeforall .org with ‘under covers agents’ in the subject line.

It is a light-hearted title to alert you to a very serious project.

Our aim is to expose just how many others there are like Libby, not only to appreciate the scale of the task but to see if we can learn from what they have in common and find treatments towards a cure for this awful illness that has devastated so many lives.

Dr John H Greensmith, ME Free For All, North Street, Downend, Bristol