Petition: Opposing MEGA

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AndyPR

Senior Member
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Guiding the lifeboats to safer waters.
Worked for me @slysaint but I've got Facebook, is that a difference between us? Anyway, here is a screenshot of it for you
Screen Shot 2016-11-01 at 12.38.55.png
 
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char47

Senior Member
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151
eafw said:
Out in the real world we have Professor Holgate turning up to SMC briefings with Esther Crawley and feeding the press a load of propaganda about debunked behavioural studies, conflating fatigue with ME, and yet again trying to undermine legitimate criticism from the patient population with buzz-words and phrases like "hostility" and "rising tensions" and "barriers are being put in the way of trials like this"

Where has that come from, have they been reading these threads ? Is there even any point in writing to Holgate to say that we are in favour of good scienctific research into the condition ( as long as BPS issues are addressed) knowing his stance and allegiences here ?
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Indeed eafw. Its nonsensical in reality, ergo it reveals such a lot about them. It's not good at all :thumbdown:


I've been on the fence about OMEGA but this morning, seeing what the SMC have done regarding fitnet, I'm beyond distressed and just LIVID about this B*llSh*t study being done, on children... CHILDREN! And based on Dutch research with the same flaws as PACE - outcome thresholds for so called "recovery" being virtually the same as the threshold for being ill enough to be part of the trial, & null results at long term follow up - it's utterly outrageous.
The promotion of an agenda regardless of the evidence.When are they going to grasp that the patients with the CF she diagnoses & treats, probably DO need this kind of intervention & thats wondereful. But it's not M.E.!:bang-head: & will only be a thorn in the side of those who are truly organically ill.

But this practice of discrediting any opposing voices before they've even spoken, trotting out this line about harrassment again & again, it's totally underhand & sinister imo.
I'm making no accusations but this is the exact technique abusers use to make sure their victims will not be listened to. Anyone who's been in a domestic violence situation will tell you that this 'playing the victim' & discrediting critics before they have even raised the criticism, is just classic, classic abuser behaviour. - again making no accusations but just saying.

And that the vice chair of the CMRC is doing this study, along with the hideous MAGENTA, & the Chair himself is condoning & promoting it.... NOT OK AT ALL.

Prof Holgate condoning this continuous defamation of anyone who critiques the study as harrassers/hostile/etc. I'm sorry Prof Holgate but it's disgusting & I am grossly disappointed in you. We have been harmed by this agenda & allowing your colleagues to say these things without challenge is inexcusable.

With all that i've seen about the way the CMRC set up (tymes trust emails release etc) & now this.... while i appreciate that it may have great people also involved, people who genuinely want to help patients (& i thank God that Dr S is on the board to try & at least have some kind of voice speaking reality to them), it seems to me certain that the while the CMRC is headed by people who promote such flawed ideologies, & their policies simply reinforce the hubris of those who are so convinced they are right they are unable to even hear legitimate criticism as anything other than hostility, then anything coming out of the CMRC must be viewed with extreme suspicion.

So now I feel a very strong urge to sign OMEGA & more besides:mad:

However, ime experience in dealing with and advising people who are trying to escape/break the hold of abusers as mentioned above... The winning strategy when the abuser has defamed you as hysterical/not right in the head etc etc, and predicted your criticism & anger (& thus discredited it)... it only GIVES the abuser more power when the victims give in to getting angry & showing it. It makes them look right & plays into their hands.
So i very much hope that any criticism of fitnet will be polite & respectful, despite the fact that they imo deserve no respect whatsoever after this.

<it's taken me 2hrs to write this so apologies if it cross posts with anyone>
 
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char47

Senior Member
Messages
151
eafw said:
Yes, this a million times over. We have to get this set up.
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Indeed, Molly & i were takling about this issue on the thread earlier... post #408
I think this particular thing is worth a thread of it's own to discuss ... do others agree?


Edited - to remove confusing quote
 
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slysaint

slysaint

Senior Member
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2,125
snowathlete said:
2,542 supporters of the MEGA petition
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can someone post on the comments of the MEGA petition............"if you want more than CBT and GET it's time to withdraw your vote " and link to OMEGA?

EDIT: Have found someone called Steve Hawkin who has done this please see my later post and help get it bumped up on the CMRC mega petition comments.
 
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Marky90

Marky90

Science breeds knowledge, opinion breeds ignorance
Messages
1,253
Jan said:
Anyone would think they actually want MEGA to be opposed? Maybe they do, then they can blame the patients for not wanting biomedical research.
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Nah, it should be pretty clear that they were the unwanted. But obviously they would spin it, i guess.
 
Molly98

Molly98

Senior Member
Messages
576
Perhaps they do Jan so that they can spin it to aid their cause - see all these psychopathic patients, these twisted vexatious people trying to stop these poor innocent children from being cured.
 
Esther12

Esther12

Senior Member
Messages
13,774
snowathlete said:
Well if today's headlines about Crawley's work, backed up by Holgate as "high quality research" don't leave you wanting to sign the petition to oppose MEGA, I wonder what will.
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Yeah. I was still a bit on the edge, perhaps just out of a desperate desire for hope in the UK, but it's like they're trying to make it clear to us that the CMRC was about undermining patients who dare question poor quality research.

eafw said:
Yes, this a million times over. We have to get this set up.
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The way patients who question the UK medical establishment have been smeared and undermined is pretty unusual. The decent groups trying to push back are in a very difficult situation.
 
Jan

Jan

Senior Member
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458
Location
Devon UK
charles shepherd said: ↑
out in the real world we have a situation where Professor Stephen Holgate (who is a really decent doc who genuinely wants to help people with ME/CFS)

eafw said:
Out in the real world we have Professor Holgate turning up to SMC briefings with Esther Crawley and feeding the press a load of propaganda about debunked behavioural studies, conflating fatigue with ME, and yet again trying to undermine legitimate criticism from the patient population with buzz-words and phrases like "hostility" and "rising tensions" and "barriers are being put in the way of trials like this"

Where has that come from, have they been reading these threads ? Is there even any point in writing to Holgate to say that we are in favour of good scienctific research into the condition ( as long as BPS issues are addressed) knowing his stance and allegiences here ?
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@charles shepherd Can I ask, do you stand by this comment in the light of his actions today?
 
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char47

Senior Member
Messages
151
Molly98 said:
Perhaps they do Jan so that they can spin it to aid their cause - see all these psychopathic patients, these twisted vexatious people trying to stop these poor innocent children from being cured.
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Precisely Molly. This is my fear about OMEGA, - that it will simply be used as ammunition against us. It's so infuriating :bang-head:
 
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char47

Senior Member
Messages
151
Well thats it. I'm signing OMEGA. If they use it against us let em! If it puts all the omics scientists off it's a shame but after today's events in the media I have no faith whatever that MEGA will end up being anything other than yet another stick to beat us genuine ME sufferers with, regardless of the results.
Lets fund & support the international researchers & stick 2 fingers up to this lot in the UK. It's a shame that good researchers might be put off but so be it. Better no research at all than anything that can be spun & twisted to reinforce BPS bullsh*t, which it will be, regardless of the results.
I'm sorry but that's just how i feel.

Other than a few individuals i am on the whole disgusted with the CMRC after this FITNET media blitz. I really am. I just dont know how people can be so convinced by such extremely poor science. Well it's not even science is it, it's not worthy of the name. It beggars belief.

A relative of mine dropped a phd in microbiology, because she said the politics in science were so appalling she didnt want to be involved with it. And so didnt pursue a career she was incredibly gifted in. Now I know why.
 
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