Open Letter to Healthwatch

If you took part in the Healthwatch survey of NHS ME/CFS services, you will be disappointed to read the following open letter from ME patient Karen Morris, who initiated the project. The information from such a large survey will be a very valuable resource and it is a matter of great concern that it is not apparently being shared in the way that was promised.  After so much effort and – presumably – expense, why should the anonymised results be kept under wraps? Karen has given permission for the letter to be reposted.

Update: Following this post, there have been some very helpful responses on Twitter from Healthwatch Trafford offering to make the survey info available when it has been anonymised and explaining that they are still hard at work on the survey. All of which sounds promising. It will be interesting to see the results…

Open letter to:
Healthwatch Trafford
Trafford MPs: Kate Green, Graham Brady, and Mike Kane.
Cc: Healthwatch England

In November 2014, I created a project for Healthwatch Trafford to allow M.E. (CFS) patients to give good and bad feedback on health and care services through a survey. Healthwatch Trafford made this available to M.E. patients throughout England.  I am extremely grateful to Healthwatch Trafford for this.

Healthwatch told me told that this is one of the most successful responses, with 880 patients from England completing the survey within the first month (by 14 June 2015) and probably a lot more since.

The results were to be: –

1. Placed in a report written by Healthwatch Trafford.

2. Sent to the other relevant local Healthwatch.

3. Sent to Healthwatch England, to see if it was a national issue.

4. To use the information to improve health and care services for patients with ME (CFS).

To my knowledge, this has not happened, except results being forwarded in Greater Manchester. I have sent regular emails and given a reasonable period of time – It is now March 2016. Continue reading “Open Letter to Healthwatch”

Keep Watching

‘Somatoform disorders’ have reared their heads in the ME-related news recently. First there was the announcement that one of the control groups for the upcoming and eagerly anticipated US National Institutes of Health (NIH) study of post-infectious CFS would be people with ‘functional movement disorder’, a strange choice which has made a lot of ME patients feel uneasy. The NIH explained: “Functional Movement Disorder was chosen to contrast post-infectious ME/CFS patients with a very well-studied group of patients with clear psychological illness with neurological presentation.”

But why not compare us with, say, AIDS or MS patients, people have asked? Why choose these ‘functional’ patients? It is difficult to avoid the suspicion that the NIH may be secretly looking for similarities rather than contrasts between people with ME/CFS  and those with this so-called ‘functional’ disorder. And if such similarities are found, what then?

There is, after all, no proof that any condition is ‘functional’ or ‘somatoform’ or ‘psychogenic’ or whatever you want to call it – as Doctor Speedy explains here. These diagnoses are based entirely on the opinion – and in many cases, as we shall see, the presumption – of the doctor. When it comes to such so-called ‘psychogenic’ conditions, otherwise known as ‘medically unexplained symptoms’, evidence-based medicine seems to go out of the window.

So these poor people with movement disorders may have conditions which are no more ‘psychogenic’ than ME is, yet according to the NIH they have ‘clear psychological illness’. So if we have similarities with such patients, what does that mean for us in the eyes of the NIH?

Perhaps I am being unduly suspicious here. There is plenty that seems to be good about the NIH study. It is large scale, it is studying post-infectious CFS (i.e. patients whose CFS started with an infection) and there is going to be a particular focus on the cardinal symptom of post exertional malaise. Continue reading “Keep Watching”