• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The MEGA project: poll on what you consider acceptable--version 1, closed for further comment

What variation of MEGA is acceptable to you?

  • I don't care/I have no opinion.

    Votes: 0 0.0%
  • MEGA is fine as is.

    Votes: 1 3.6%
  • MEGA should not preceed in any form.

    Votes: 2 7.1%
  • White and Crawley out AND definite ME selection criteria AND many severe samples.

    Votes: 8 28.6%
  • Definite ME selection criteria AND many severe samples.

    Votes: 1 3.6%
  • Definite ME selection criteria only.

    Votes: 1 3.6%
  • Many severe samples only.

    Votes: 0 0.0%
  • White and Crawley out only.

    Votes: 0 0.0%
  • White and Crawley out AND definite ME selection criteria.

    Votes: 2 7.1%
  • White and Crawley out AND many severe samples.

    Votes: 0 0.0%
  • My preferred option isn't shown.

    Votes: 2 7.1%
  • White/Crawley out, ME selection criteria, many severe samples, patient representation.

    Votes: 7 25.0%
  • White/Crawley out AND patient representation.

    Votes: 2 7.1%
  • White/Crawley out, ME selection criteria, patient representation.

    Votes: 1 3.6%
  • White/Crawley out, many severe samples, patient representation.

    Votes: 1 3.6%
  • ME selection criteria, many severe samples, patient representation.

    Votes: 0 0.0%
  • ME selection critera, patient representation.

    Votes: 0 0.0%
  • Many severe samples, patient representation.

    Votes: 0 0.0%

  • Total voters
    28
Status
Not open for further replies.
Messages
30
PACE spent 8,000 pounds per person (641 people) and was low tech/no tech.
How on earth could MEGA study 12,000 samples?
Peter White has been talking about a study like this for years- looking at biomarkers for stress, fatigue, depression, anxiety.
MEGA does not look like a study on ME/CFS at all.
Studies of ME/CFS actually need to look at ME/CFS symptoms - and should not focus on comorbid mental health issues as MEGA does.
Unless every person meets the CCC plus PEM or ICC its a total waste of money and may be harmful.
Money needs to be targeted to where it has a good chance of finding pathophysiology and biomarkers.
The knowledge of ME/CFS is far too limited at this stage to do a broad study.
Each phenotype once identified by biomarkers can be removed from the general ME/CFS pool..
 
Status
Not open for further replies.