MEGA plan on selecting patients based on the NICE NHS criteria
The NICE criteria are weak. We should consume them to make way for stronger criteria.
all need to have PEM, which will be defined in agreement with the Patient Advisory Group and are also going to assess patients for meeting other research criteria such as Fukuda,CCC,ICC, which sounds very good as regards making sure that it is really M.E. sufferers whose data is analysed and establishing different subtypes. They also say they will consider using the DePaul Symptom Questionnaire designed by Dr. Jason.
Can you provide a quote please? This might be from the Q&A but it's still good to have everything in the same place. If this is the case, it does not match what was being said previously. Which is not, in and of itself, a criticism -- if it has shifted, it means they were listening, which is great. However, I would not be surprised if it ended up shifting
back because that was too tough to do, or funding ran low, or what-have-you. Again, past being prologue.
M.E. patients with secondary depression will be diagnosed as such and presumably any biological markers of depression isolated from biological markers of M.E.
This displays so much
faith. What incentive do they have to differentiate between primary and secondary depression beyond 'good science' -- an abstract concept that hasn't seemed to matter to these selfsame researchers in the past? How is it that they mean to differentiate between the two?
In this regard it is actually not really clear to me why M.E. sufferers tend to have confidence in the Naviaux study on Metabolic features of CFS for example, and yet reject MEGA which could do much more than this.
It's been stated quite clearly in response to many of your comments. I can see you disagree, but that doesn't mean no one has explained why, or that their reasoning is nonsensical. The researchers involved in MEGA have a poor track record. We have no reason to trust that their research will be even of middling quality. We have good reason to suspect the conclusions they draw will cause harm to patients. The point others have made here -- that the exact same reassurances were posted pre-PACE -- should be sobering.
Ignoring the past and hoping for the best is no key to successful anything.
his expanded CFS metabolomics study asking questions about childhood trauma don't seem to attract criticism at all, versus Professor Crawley
Again, you should be searching PR. Those comments were noted and people responded unfavorably to them. However, there is a significant
difference in reaction. This, too, was already discussed however: it is not so much that patients as a group reject the idea of studying psychology on the whole. It's that Crawley is inherently untrustworthy. Did you look at her most recent presentation on patients at all? Would you agree with the broad, sweeping statements she made about patients even though she has no peer-reviewed literature that supports her libelous statements?
Don't add that she's the bitter pill we must swallow in order to
earn good science. There is something deeply, intrinsically wrong there. We deserve good science with or without her; and we are unlikely to get good science with her involvement.
we must secretly think it is psychological.
Crawley's views are not a 'secret': she has stated them overtly on multiple occasions, she just supposes people won't check her quotes! Posters tend to cite here on Phoenix Rising, so you can find a heap of evidence that Crawley not only says ME/CFS is psychological, but that she links ME/CFS with as many unsavory psych diagnoses as she can juggle. She says different things to different audiences: the more hidden from patients she believes her statements are, the more openly vicious she becomes.
Unless her view has done a total 180 between last November and a week ago, that is. Unlikely.
are you involved in the the planning of MEGA in anyway?
Secondly, without commenting on MEGA and what it could or could not be are you aware of the numerous problems PWME have with Esther Crawley?
She is a patient, but does seem very attached to MEGA and tends to show up here only to make comments about it IMO. Which is certainly allowed.
I can only speak for myself here. I was all set to sign in favour of MEGA some months back, thinking that on balance it would be good. But then EC put her foot in it one time too many, and convinced me that the constant conflations, manipulations and powerful influence rang too many bells with other people I have known in my life, and have learnt the importance of listening to my gut-feelings on. I would still consider supporting MEGA, or something akin to it, if EC were completely out of the picture
Yep. On all counts. I resisted signing OMEGA for ages until this latest talk by E.C. Her most recently commentary was that poisonous. At this point, she is the third rail of ME/CFS research.