The New MEGA poll

FredaF · Nov 25, 2016

It is very easy for MEGA to address our concerns.
1. Get rid of 2 particular people - who make outlandish and misleading claims.
2. Use CCC as an entry criteria and stratify for PEM, ICC, IOM as well.

A bonus would be to:
3. Build on the already existing bio-bank of 500 samples.
4. Build on the work by Invest in ME.

The fact that MEGA can't even address 1 and 2 makes for another poor study.....unfortuatley Action for ME and the Association of Young people with ME will back anything by the people making outlandish and misleading claims.

Valentijn · Nov 25, 2016

In case anyone is curious (I was!), it looks as though there's been 101 votes on this poll thus far

The New MEGA poll

How should the MEGA study change to get your support?

What's MEGA?

I'll never support MEGA in any form

Exclude Peter White (lead PACE author)

Exclude Esther Crawley (psychosocial ME/CFS pediatrician)

Exclude all "biopsychosocial" (BPS) researchers

Exclude Action for ME (AfME) from involvement

Exclude Association for Young people with ME (AYME) from involvement

Exclude the ME Association (MEA) from involvement

Require some direct (not charity) patient involvement

Require direct (not charity) patient involvement in all stages

Require direct (not charity) patient approval of study design and changes

Require fully open sharing of anonymized data

Ensure a representative sample of severe patients

Require PEM for diagnosis

Require Canadian Consensus Criteria (CCC) for diagnosis

Require International Consensus Criteria (ICC) for diagnosis

Require IOM's SEID criteria for diagnosis

Other (please describe in the thread below)

MEGA is perfect as it is

I'll support MEGA even if no changes are made

FredaF

Valentijn

Senior Member