MEGA Patient Advisory Group

For better or worse, I found out today I’m on the MEGA patient advisory group. ‘Mixed feelings’ is the best way to describe my reaction. I ‘m pleased that I may have a chance to make a difference to the study but aware that it might not be easy. I will do my best…

In the meantime, if anyone who is reading this has also been accepted onto the group, please get in touch. I only know of two other members so far. It will be very useful for us all to be in contact.

 

Spreading the Word

privateeye-hammond-dec2016-web

Dr Phil Hammond’s latest column in Private Eye is called ‘Trial on Trial’. You may remember he wrote quite a helpful column about ME just recently. This time he writes in response to criticism from a doctor who got in touch to say:

“Every illness has a physical, psychological and social component, and limiting diagnosis or treatment to only one aspect of someone’s illness is likely to lead to a much poorer outcome. This ‘triple diagnosis’ applies to any complaint you care to consider, although obviously in varying proportions. The one exception seems to be CFS/ME, where any suggestion that there might be a psychological or social component leads to criticism. That CBT is the only treatment which has repeatedly been shown to have any benefit is conveniently ignored.”

It does become tiresome having to deal with such ‘arguments’ time and time again. Once upon a time it was ‘yuppie flu’ that popped up in every article about ME. Now, at long last, that is slowly fading away. Yet now we have to deal with this endlessly repeated idea that ME patients have an unreasonable and unsubstantiated resistance to any suggestion that there might be a psychological component to our illness. People with cancer are happy enough to go for CBT, we are told. So what’s our objection? Continue reading “Spreading the Word”

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.

Taking a Closer Look

Regular readers will know that I recently received a response from Professor Holgate to our 200-plus-signature email expressing concerns about the proposed MEGA study. “We are very appreciative of the enthusiasm being shown to pursue an exciting ‘omics-based research project in the field of M.E…” he said, with no mention of the various pressing concerns we raised in our email. You can read the whole of his message in this previous post.

It is a strange response indeed. It is like the shipping line which ran the Titanic writing to bereaved relatives to thank them for their interest in the general principle of oceanic travel. To carry the metaphor further, Professor Holgate is pleased to be in touch with us, but changes the subject whenever we mention icebergs.

I have now received a further response (addressing my response to his response), this one saying so little that I won’t bother printing it here, but once again referring us to the brand new MEGA website, which is indeed up and running at last.

If you’ve seen it, you were probably less than impressed. At first sight, it looks pretty much Continue reading “Taking a Closer Look”

FITNET Fiction

Here’s my latest response in the ongoing dialogue with Professor Holgate, CMRC Chair, about the proposed MEGA study:
Dear Professor Holgate
Thank you for your response to our email. I have not been able to consult with all the 218 people who signed the original communication but those whom I have been in touch with have expressed considerable disappointment that you did not attempt to address the specific issues we raised in our letter.
However, I await the new website with interest and hope that the FAQ section will at least deal with the two main issues we mentioned in relation to MEGA:
  •  the recruitment of a representative sample of patients (including the severely affected) who have the cardinal ME symptom of post-exertional malaise, and
  •  the suitability of Professor Crawley to take charge of such recruitment given the highly imprecise nature of her previous work in this field

Many people who signed the previous letter also left relevant comments Continue reading “FITNET Fiction”

More Voices

Many patients and carers left additional comments for Professor Holgate of MEGA when they signed our recent letter. I wasn’t able to carry these over when I transferred the post to its permanent home, so I’m reprinting some of them here.  Sorry I haven’t included them all but I am grateful for all your comments and signatures nevertheless. I shall link to this post when I send the follow-up letter to Prof Holgate (which I hope till be tomorrow). I will post the follow-up letter here on the blog as well.

Here are the comments: Continue reading “More Voices”

Reply from Professor Holgate

Well, here’s Professor Holgate’s response to our recent email. Do I feel heard? No. What about you?

Dear Spoonseeker (I am not sure whether this is the correct title but I hope this reaches you all),

Thank you for your email. We all recognise the concerns that are held about the MEGA Project and value your input. We are very appreciative of the enthusiasm being shown to pursue an exciting ‘omics-based research project in the field of M.E. and  the issues that you have raised. We are soon (next week I hope)  will be issuing a description of what MEGA comprises on a new website and will also have a frequently asked questions (FAQ) page which will be regularly updated. The latter is aimed at addressing the majority of questions that have been raised in your and other emails through the FAQs. Involvement of people with M.E. at the core of MEGA will be essential through an Advisory Group of people with M.E. and their carers.
As yet the first grant outline has not yet been submitted. We will do our very best to create the most competitive application, but even with this there is  certainly no guarantee of funding. Please be assured that we will definitely involve the M.E. community in the proposal. As you will have noted I have brought the very best scientists from across the UK to assemble this application. It will be a real team effort. We need everyone’s support to help with this otherwise it will fail at the first hurdle.

Thank you again for expressing so much interest in our endeavour. Finally, I should add that I am not a CFS/M.E. researcher myself but someone who has realised we must make inroads into the causes of this (these) distressing and serious disorders.

Best Wishes,
Stephen.

Professor Stephen T Holgate CBE, FMedSci
MRC Clinical Professor of Immunopharmacology