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 which may interest you. I have compiled a few of them in this post.
Finally, the newly produced posters recruiting for Professor Crawley’s FITNET Trial have given us further cause for concern about her involvement in MEGA. There seems to be more concern with headlines than with accuracy. The posters are very misleading as we have indicated below:
- ‘Most will recover at 6 months’ – is it usual to predict the rate of recovery before a trial has even started?
- We presume the figure ‘less than 10%’ derives from the control arm of the Dutch trial? But most of those patients *did* receive treatment. The majority of those adolescents who fared so badly were given graded exercise or CBT.
- ‘Most will recover’ presumably refers to the 63% who showed improvement in the Dutch study but – according to Profs White and Chalder – usual statistical practice would have given a figure of 36%, which is much less impressive, especially bearing in mind:
- 3 out of 4 of the ad hoc recovery definitions were almost the same as the entry criteria
- the subsequent long term study revealed no difference in recovery rate between FITNET and the other arm of the trial.
- Only about 25% of the patients had the sudden post-infectious onset which is typical of ME
- Over 40% of the patients attended school full time in the fortnight before the trial began (i.e. they weren’t very ill to start with).
Thank you for reading. Any comments you may have about our concerns are always welcome…
spoonseekerdotcom 
Excellent response, great that you’re plugging away at it.Much appreciated.
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Thanks for your encouragement, Di! David Tuller is plugging away at it too. Another new post on FITNET today: http://www.virology.ws/2016/11/28/trial-by-error-continued-a-follow-up-post-on-fitness-nhs/
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Time to refer the posters to the ASA: Don’t you think? How is this any different to the misleading Lightning Process ones?
Let them prove it works to the ASA first.
https://www.asa.org.uk/Complaints.aspx
Keep it up. (y)
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Who’s doing it, Steve – you or me?
Do you think it’s covered by ASA or is it to do with the ethics committee that presumably approved the research? I must admit I have no idea how these things work…
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You know more about this trial than me, but I don’t think anything matters unless they can prove what they print is true. They are saying that ‘most will recover at 6 months’ but not saying ‘and then at follow up they will be the same as the ones who didn’t receive the wonderful treatment’. It’s a printed advert for a service, so just copy it to the ASA and tell them why it’s misleading.
It’s straightforward to fill in the form. I did it for the Mickle ‘therapy’ and ‘won’. They always just pop up again on another site, but it might not be so easy for Crawley and co to keep making claims they can’t prove, if they knew they were being watched by ASA. If they start behaving like woo salesmen they should expect to take the consequences.
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