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Petition: Opposing MEGA

slysaint

slysaint

Senior Member
Messages
2,125
Please like this post in the comments section on the MEGA petition:
Not so much for what he says but because he's put the link to the OMEGA petition at the end.
[Hum: Comments don't post unless we sign first. Red flag on trust before we start. :/ ] So I have to begin again...

With regard to the new counterpetition: I hope that the trustees of MEGA will take the following observations in good faith as well-meaning advice, because I do not want this unfortunate situation to perpetuate splits in the patient, charities, and research communities, that should not be necessary where we need coordination: not competition.

It seems unfortunate that there has to be a petition of this kind against what, in the right hands, and with careful preparation of protocols in advance, would undoubtedly be a gathering of very useful data; and I feel uncomfortable that this will discourage some of the very able researchers and research teams who have been brought into the MEGA group but had no part in earlier ill advised research proposals; but it seems that something of this sort will have to be done, to ensure a complete new start, and clean break with the discredited 'science' of biopsychosocial egotists.

I apologise to the, well-meaning, I'm sure, Prof. Holdgate, and those others who I fear have had to be reticent in criticising poor research, because of the binding conditions that were attached to membership of the Research Collaborative, under the direction of the partisan 'Science Media Centre', but the time really has come to return to both freedom of speech and information in this research field, after the gambit of crying 'harassment' after any honest questioning, has been so clearly shown up for what it was, in the courts.

I would advise that a new steering group be set up for a large and inclusive, data gathering and biomic sequencing and typing study with the major emphasis on the severely affected, who are the most likely to yield clear differences worthy of more intensive study. By all means collect data from a quota of less severely disabled/sick patients as well, but only to the number necessary to provide a control match for each of the seriously ill study subjects. A similar number of healthy controls will also be needed.

Thus the size and expense of the study should stem from the maximum number of seriously ill participants for statistical certainty, times three. If that turns out to be a very big cost: then let all patient organisations and researchers get together and lobby for those necessarily big funds to be made available. With the skyrocketing costs of indefinite medical care, I would say that, no matter what the cost of such a project, it will be tiny compared with the costs of the failure to treat, into infinity.

[I have just been presented with a Change.org offer to pay for promoting this petition to other users of the site. I don't think this is a good idea, because we want to encourage principled and knowledgeable support and comment, rather than 'nagging ticks'. I had not realised that I was being pestered to support petitions about which I know nothing, because Change. org was allowing privileged access to its clickosphere. ]

https://www.change.org/p/opposing-mega-a-vote-of-no-confidence-in-mega-research-for-me-cfs/c/523944506

Steve Hawkins, Luton, United Kingdom

1 week ago

You will find it by going to
Most recent comments and he's about 20 or so down.
If you have voted on either or registered you should have access to all comments.
here's the link again https://www.change.org/p/support-th...ts-application-to-major-uk-research-funders/c

NOTE: I AM NOT SUGGESTING YOU SIGN THIS PETITION (just thought I'd make that clear;)) just want to bump up the comment with the OMEGA petition link.
 
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Jo Best

Jo Best

Senior Member
Messages
1,032
Countrygirl said:
When writing our open letter to MEGA does ME warrant the term 'disease' or do we still have to refer to it as an 'illness'.
Click to expand...

According to the World Health Organisation it's a neurological disorder (my bold). It's in the chapter on Diseases of the Nervous System under 'Other Disorders of the Brain'. Its Benign (because it doesn't kill quickly) Myalgic Encephalomyelitis and is at WHO ICD-10 G93.3 along with Post-Viral Fatigue Syndrome. CFS was added to the alphabetical index with a ref. to G93.3 so all three are terms for neurological disorder according to WHO.
 
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char47

Senior Member
Messages
151
Jo Best said:
Fear is what they're banking on. After all, they claim that fear of exercise was a moderator of efficacy in the PACE trial. Now is the time to have the courage of our convictions. Together we can be fearless. :)
Click to expand...

I just wish we could find a way to stand up to them without giving them ammunition at the same time. But i've signed it at any rate, i just dont believe it can be redeemed any more.
 
Jo Best

Jo Best

Senior Member
Messages
1,032
B

Barry53

Senior Member
Messages
2,391
Location
UK
AndyPR said:
Just posted this comment on the two blogs by scientists so far on the MEGA petition
Click to expand...

Just been trying to get my head round the info at the link @AndyPR posted:-
RESULTS:
After a mean follow-up of 2.7 years, 66 (58.9%) adolescents had recovered from CFS. Most adolescents who recovered directly after treatment with FITNET were still recovered at LTFU. At LTFU there was no difference between the recovery rates for the different treatment strategies (original randomization: FITNET [64%] versus any form of usual care [52.8%]). Per additional month of "pretreatment disease duration," the odds for recovery were 4% lower (odds ratio: 0.96; 95% confidence interval: 0.93-0.99; P = .016), and per added point on "focus on bodily symptoms" (Body Consciousness Scale) of the mother (0-20 points) the odds for recovery were 11% lower (odds ratio: 0.89; 95% confidence interval: 0.80-0.99; P = .029).

CONCLUSIONS:
The short-term effectiveness of Internet-based CBT on adolescent CFS is maintained at LTFU. At LTFU, usual care led to similar recovery rates, although these rates were achieved at a slower pace.
Click to expand...

I do not understand all of this, but it seems to be saying (but others please say if I am wrong):-
  • In the short term, 64% showed recovery with FITNET.
  • In the short term, 53% showed recovery with normal care.
  • In the long term, 59% showed recovery, irrespective of care type.
  • Most who recovered in the short term with FITNET, were in the 59% long term.
  • Chances of recovery fall off sharply, the longer CFS had existed before treatment.
  • In the long term there is no difference in recovery rates between FITNET and normal care, albeit CBT got there a bit quicker.
Cannot get my head round ...
"focus on bodily symptoms" (Body Consciousness Scale) of the mother
Click to expand...

The headline 66% CBT cure, to me at least, sounds like lying by omission? Got a feeling there might be other omissions.

Would be good if some folks who really know their stuff can pick the bones out of all this.

EDIT: 22.42, 1 Nov 16: I think this link suggests my figures above may be wrong. Do the two different sources disagree? Or just my understanding of them?
 
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Jo Best

Jo Best

Senior Member
Messages
1,032
char47 said:
I just wish we could find a way to stand up to them without giving them ammunition at the same time. But i've signed it at any rate, i just dont believe it can be redeemed any more.
Click to expand...

This Tribunal saw through them and I think we can rest assured - http://informationrights.decisions....iversity of London EA-2015-0269 (12-8-16).PDF

The Opposing MEGA petition is a perfectly legitimate and reasonable means to respond to the MEGA petition.
Tribunal.PNG
 
eafw

eafw

Senior Member
Messages
936
Location
UK
Esther12 said:
Looks like it has been edited.
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I have an archive of the original, and he is quoted by the BBC, but do we have any confirmation he was actually there ? I've tried to look into this to get a definite yes, but have drawn a blank
 
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char47

Senior Member
Messages
151
Jo Best said:
This Tribunal saw through them and I think we can rest assured - http://informationrights.decisions.tribunals.gov.uk//DBFiles/Decision/i1854/Queen Mary University of London EA-2015-0269 (12-8-16).PDF

The Opposing MEGA petition is a perfectly legitimate and reasonable means to respond to the MEGA petition. View attachment 18036
Click to expand...
I'm talking about the court of public opinion though, where they are ecrtainly not (in the vast majority of cases) seen through.
(by "public" opinion i mean Drs/medical & scientific community as well as general public)

I agree that omega is perfectly legitimate. LThat wont stop it being used as ammunition to discredit us. They'll use whatever they're given.

but i honestly dont care at this point, I'm over it. they say all this crap about us anyway, so we may as well carry on doing what's right & let them do their worst. At least i feel like i've spoken up now.
 
Esther12

Esther12

Senior Member
Messages
13,774
eafw said:
I have an archive of the original, and he is quoted by the BBC, but do we have any confirmation he was actually there ? I've tried to look into this to get a definite yes, but have drawn a blank
Click to expand...

I only know that the SMC reported he was. Don't know anything for certain with McCrone either.
 
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