• 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.

PACE trial data release: MEA website poll

C

charles shepherd

Senior Member
Messages
2,239
PACE trial data release: MEA website poll for March

The PACE trial research group at Queen Mary University London (QMUL) have indicated that they would welcome the views of people with ME/CFS on their refusal to release anonymised data from the PACE trial >>

"We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data in a way that balances the rights of trial participants, and future progress of the trial analysis and follow up, with the public interest in releasing trial data.”

This month's MEA website poll gives people the opportunity to express their opinion

MEA website question:

  • Should or should not the anonymised data from the PACE trial be released for independent analysis?
    • Should be released (100%, 3 Votes)

    • Should not be released (0%, 0 Votes)

    • Not sure (0%, 0 Votes)

    • No opinion (0%, 0 Votes)


      Total Voters so far = 3

Vote via the home page on the MEA website:
http://www.meassociation.org.uk

As there is considerable international interest in this issue, overseas votes are welcome in this poll

MEA letter to QMUL supporting release of the PACE trial data:
http://www.meassociation.org.uk/201...o-release-of-pace-trial-data-9-february-2016/

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Large Donner

Large Donner

Senior Member
Messages
866
charles shepherd said:
PACE trial data release: MEA website poll for March

The PACE trial research group at Queen Mary University London (QMUL) have indicated that they would welcome the views of people with ME/CFS on their refusal to release anonymised data from the PACE trial >>

"We are currently seeking further ethical and scientific advice, as well as the advice of patients, on how best to provide independent decisions about appropriate access to relevant data in a way that balances the rights of trial participants, and future progress of the trial analysis and follow up, with the public interest in releasing trial data.”
Click to expand...

I think we should be careful not to be drawn in on their terms. These people are very calculated and this could well be another SMC scheme to try to cause some more "controversy" by starting a set of disagreements that they can cherry pick.

It would not be unlike them to try to play divide and rule and only publicize the most "vexatious" responses to their request for engagement.

Just saying!!
 
Scarecrow

Scarecrow

Revolting Peasant
Messages
1,904
Location
Scotland
Now at 408 for to1 against.

Is this the most one sided poll ever?

Are MEA going to get a mention in the Guinness book of records?
 
C

charles shepherd

Senior Member
Messages
2,239
Wow!

I'm just back from London where I've been at an evening meeting with Dr Margaret Chan, the Director General of the World Health Organisation - who was talking about new and emerging infections including the zika virus (she is just back from Brazil) and Ebola virus (where post infectious fatigue is becoming a recognised complication - see note below)

And I see that we have just broken through the 500 vote barrier in less than 24 hours - a new record for the MEA monthly website poll!

Current voting intentions:

  • Should or should not the anonymised data from the PACE trial be released for independent analysis?
    • Should be released (100%, 501 Votes)

    • Should not be released (0%, 1 Votes)

    • Not sure (0%, 0 Votes)

    • No opinion (0%, 0 Votes)


      Total Voters: 502

Post Ebola virus disease syndrome - the symptoms are rather familiar.....
Expert Rev Anti Infect Ther. 2015 Aug 13:1-3. [Epub ahead of print]
Post-Ebolavirus disease syndrome: What do we know?
Carod-Artal FJ1.
Author information

Abstract
As the current Zaire ebolavirus disease outbreak in West Africa fades, the health problems of the more than 16,500 survivors have come to light. A wide range of mental and physical symptoms may occur during the convalescence stage. Reported symptoms of "post-Ebolavirus disease syndrome" (PEVDS) include chronic joint and muscle pain, fatigue, anorexia, hearing loss, blurred vision, headache, sleep disturbances, low mood and short-term memory problems. PEVDS has been associated with a decrease in functionality and difficulties to return to work. Further studies are needed to fully categorize the clinical spectrum of PEVDS. Diagnostic criteria and surrogate markers for the early diagnosis of PEVDS, and implementation of specialized health services to treat and follow-up survivors are also needed.

Dr Margaret Chan lecture at Royal College of Surgeons tonight:
https://www.gov.uk/government/news/dr-margaret-chan-delivers-mhra-annual-lecture

CS
 
C

charles shepherd

Senior Member
Messages
2,239
Current votes - well over 600 in less than 24 hours and only one vote against releasing the data so far! >>

Should or should not the anonymised data from the PACE trial be released for independent analysis?

Should be released (100%, 642 Votes)
Should not be released (0%, 1 Votes)
Not sure (0%, 0 Votes)
No opinion (0%, 0 Votes)
Total Voters: 643
 
You must log in or register to reply here.