Make Sure We Speak

After a difficult few weeks in the world of ME advocacy, it’s been really heartening to see the new critique of the PACE trial and accompanying editorial on the Sense About Science USA/ American Statistical Association website. After 7000 words of searing analysis, Rebecca Goldin concludes that the flaws in the study design “were enough to doom its results from the start”, while Trevor Butterworth’s editorial pronounces “a terminal prognosis” on the study. As far as patients are concerned, this demise cannot come too soon – and it remains to be seen if the British media, who have uncritically lauded the study on so many occasions, will consider this latest development to be worth reporting.

Nevertheless, it is encouraging for patients to receive such clear validation of what we have been saying for so long from such a reliable source. It has to be another important step in the right direction.

Trevor Butterworth writes: “David Tuller may not get a Pulitzer Prize for investigating PACE trial on a blog; but his service to—and we do not exaggerate—millions of sufferers around the world make it hard for us to think of another work of journalism so deserving of commendation.” Patients – including those who produced the initial critiques which first attracted Tuller to the issue – will heartily agree with that analysis, likewise with Butterworth’s acknowledgement of the important contribution of Julie Rehmeyer in drawing attention to the flaws of the trial. Let us hope their work pays off very soon and the study is deservedly retracted. Lead PACE investigator Peter White still has his finger in the dam but sweat is breaking out on his forehead. He must be wondering how much longer he can hold back the torrent of truth. Continue reading “Make Sure We Speak”

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Beyond the Bounds of NICE

A long time ago, in the early years of my ME, a small study in The Lancet suggested that intramuscular magnesium injections could be beneficial for CFS (as they called it). I took a copy of the study to show my GP, the late Dr Paul Moxon here in Leeds, UK, who read it and started injecting his ME patients in line with the study protocol. In a matter of a few weeks, I went from being largely housebound to up and about again. I made this transition gradually but it is worth recording, by the by, that any deconditioning which might have occurred while I was being looked after by my parents for several years did not present any significant impediment to my remobilisation. When my body got what it needed, I was able to function again. I was by no means cured but the improvement was substantial.

Since then, my ME has fluctuated and at one time I became largely housebound again. On that occasion, magnesium sulphate failed to pull me round – and I understand that subsequent trials of magnesium injections failed to replicate the success of that first study.

Nevertheless I am clear that magnesium injections helped me on that first occasion. I had several courses of six weekly injections. Each time, I began feeling better after the third week. The improvement would be sustained until a few weeks after the course but then tail off again. We eventually discovered that the best regime for me was an ongoing course of injections every three weeks. I kept this up for several years, stopping from time to time to see what would happen. Eventually I reached the stage Continue reading “Beyond the Bounds of NICE”

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”