Eleven Days of Christmas

Well, in my previous post (a few hours ago), I did say to take a closer look at the MEGA site in case there was something I’d missed – and too right I was. I had failed to read the new MEGA blog post, thinking that it was just about the change of deadline for applications to join the patient advisory group. I hadn’t realised that it also provides a schedule for subsequent weeks. Here it is:

  • 9am 13 December 2016 – Deadline for applications to join the MEGA Patient Advisory Group
  • 13-14 December – Applicants contacted and group members confirmed
  • w/c 19 December – Papers and key information sent out to Patient Advisory Group members
  • 29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held
  • 4 January 2017 – Back-up call for Patient Advisory Group if needed, to address outstanding issues from December meeting.

So patients are to be given a maximum of eleven days to read the ‘papers and key information’ before discussing it and -presumably – suggesting possible alterations in a teleconference or e-group meeting over the Christmas period! So not only are they expected to do this over Christmas, but the twelve days of Christmas has been shortened to a maximum of eleven. Notice the w/c in there – not meaning ‘toilet’ in this instance (although some might think this an appropriate place to sling the schedule) but ‘week-commencing’, so the papers could theoretically arrive any time that week, which might be as little as six days before the conference.

At least they accept the possible need for a backup call ‘to address outstanding issues’ and also feel that some explanation is due. They say:

The reason that the timescale is so short is because the mainstream funder to whom we want to apply for MEGA funding has an application deadline in early January 2017. This deadline was only recently announced and was different to the timings we expected.

and:

If we miss the deadline for this funder, we will not be able to apply again until 2018.

Even so, to use an old joke from Have I Got News For You, the words piss-up and brewery spring to mind. And of course many will say that they’ve carefully planned it like this to deliberately discourage and marginalise patient involvement. I can fully understand that point of view. If MEGA really want to win back the trust of the patient community, they are not going the right way about it.

Does this make an difference to my decision to apply for the patient advisory group? I’m still processing that one. But I’m getting more and more annoyed. Three more words have sprung to mind: ‘taking the’ and ‘piss’. And it’s not us that’s doing it…

(My normal pristine standard of vocabulary will be resumed in the next post.)

See also this OMEGA post which I should have read yesterday, including pertinent comments by Peter T.

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Not Looking Good So Far…

A few preliminary thoughts and questions come to mind in response to the latest update on the proposed MEGA Trial.

  • Question: How are patient advisory groups to be recruited?
  • The update says:

How much data we collect will depend on what our patient advisory group says will be acceptable to consenting patients and how much funding we get.

I’m concerned that this will be used as an excuse not to develop the very important Canadian Criteria cohort – Profs White and Crawley have already decided that the Canadian Criteria are not practicable

  • Clinicians who diagnose at the NHS clinics can often be OTs, nurses etc. Some of these may be very good but some have very little experience of ME/CFS. It seems inevitable that they will be focussing on what they believe to be the key symptoms of ME/CFS and not necessarily taking a full and complete history.
  • We know from experience that NHS notes in general can be inaccurate as often as not.
  • What about the severely affected who can’t get to clinics? Some clinics provide a limited home visiting service or skype/telephone consultations  but the vast majority of the severely affected do not receive these services and so will be excluded from the trial. As Prof Ron Davis says, the severely affected provide the most important data.
  • There is circumstantial evidence that many patients are rediagnosed by some of the clinics as having ‘pervasive refusal syndrome’ or ‘illness anxiety’ or some other ‘psychogenic’ condition if they don’t make progress with GET or GAT or if the clinic doesn’t think they will make progress. These patients may be at the more severely affected end of moderate so their elimination will skew the cohort.
  • Similarly, we know that many patients who drop out of therapy are not followed up on. It seems likely that these will not be included in the project, so once again the cohort will be skewed.
  • The update says:

We don’t think we will have the money to do this for everybody or for everything.

This is already sounding a bit half-baked. We’ve had enough such research. Isn’t it better to set out to do less and do it properly?

  • The clinics in general subscribe to the biopsychosoial model of the illness. Given what has happened with the now largely discredited PACE Trial, it is understandable that informed patients  will be mistrustful of a study which has the NHS Clinics at its heart. In its presently proposed form and on first reading, this project seems to me to be unlikely to obtain the support of the whole ME/CFS community.  This is unfortunate and I hope that another way of proceeding can be found.