The mother of all pregnant pauses. I hope the delivery matches our expectations. (Ok I've now run out of pregnancy puns).
David Tuller: New Virology Blog post (May 3rd)
- Thread starter charles shepherd
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The mother of all pregnant pauses. I hope the delivery matches our expectations. (Ok I've now run out of pregnancy puns).
What a great line!
Esther12
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It is getting a bit worrying that the MEA still haven't responded to Holgate's statement. They must think that this is unacceptable, I'm just a bit worried that they might feel trapped in a relationship where they should put up with being treated in ways that they know are not acceptable.
If Holgate knows that the MEA will put up with whatever he does, they are just going to keep getting walked all over, and that's really bad when they're acting as patient representatives.
If Holgate knows that the MEA will put up with whatever he does, they are just going to keep getting walked all over, and that's really bad when they're acting as patient representatives.
I worry that your concerns are a very real possibility. But everyone knows that the only answer to abusive relationships is 'get out'. There is only one vested interest here..or at least there should be: patients. There is no combination of words from the OED that could create a persuasive and honest rationale to stay (imo).
Snowdrop
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This is how I would read it and I think they will continue to do whatever they want with impunity.
Considering CS has reiterated multiple times that he would not leave the tent I think the situation would be one of some long evaluation.
I don't mind if he changes his mind about what he's said.
IMO they are a contagion that needs to be isolated. There is nothing good coming from CMRC. Siding with the patient community and getting on with working together outside raising funds and finding other funding grants, using the existing biobank etc are all doable.
I suspect things are going on behind the scenes.
I'm hoping that a letter or similar from all the experts at the ME colloqium might carry some weight with the UK Health system.
@charles shepherd
I'm hoping that a letter or similar from all the experts at the ME colloqium might carry some weight with the UK Health system.
@charles shepherd
Esther12
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The longer it goes on the more I worry that pressure is being put on the MEA behind closed doors, and that they will buckle. The whole CMRC set-up seems increasingly creepy and manipulative to me. They've not exactly embraced transparecy and open debate, have they?
Throws the MEA into an ever increasingly dodgy light (at least from where I'm standing). The circumstances are not conducive to a delayed reply. This delay has gone on way too long. It's a binary choice: either they support Holgate's insistence that the CMRC fully support Crawley (which we know isn't true since MERUK have left the CMRC) or they think it's perfectly ok for EC to behave in the way she did at the renal conference. It's a 'yes' or a 'no' in that respect. It shouldn't take this long to work that out!
slysaint
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MEGA still features on MERUKs website, and the MEGA website still includes MERUK, the Qand A page has not been updated since March. A lot has happened since then..............time for more questions and answers.
Esther12
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Still a bit early to really say, and it is possible that the MEA have taken a strong line already (insisting that their continued membership requires an apology to Tuller; real engagement with patient concerns about PACE, etc; and retraction of Holgate's statement?) and Holgate is just delaying his own response... so maybe my concerns are just over-blown fears, but the problems with the CMRC so far make it more difficult to hope for the best.
Snowdrop
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It may seem quite the simple response rationally but I expect that in other ways it is more difficult.
I agree about what outcome for a response I think is the best -- that is 'leaving the tent'.
I have all day to hang around here with nothing better to do but eagerly await CS answer to our questions. But I don't feel there is anything hanging in the balance or game changing about needing the response now. If the response is not to our liking then it delays the inevitable further debate on the subject but that doesn't change our situation.
I do think an answer is necessary and dodging the issue entirely isn't OK but if there was a great deal of commitment to seeing something through that CS thought was the right choice to move things forward it would take me time to wrap my head around letting it go.
Maybe we can turn our thoughts to what and how Esther Crawley might try to spread her lies about the nature of ME as just a continuation of a fatigue syndrome and her lies about patients advocating against her.
No doubt having been caught out at the Nephrology conference she'll insist on no social media while seeking other venues for her crusade. So how to continue to call her out?
I presume the MEGA team are still working on presenting a new proposal for grant money. I have been expecting to hear updates from the PAG since they are there as advisors on behalf on patients. So where the F are they? I they don't want to be seen as puppets then perhaps they can let us know what's going on. I know there are probably things they can't say but that shouldn't stop them giving an update. Or maybe they do and it's on the AfME site.
I think that continuing to try and have a dialogue with others on the MEGA team such as Chris Ponting and George Davey Smith as to our concern that their biological findings will simple be used to harm PwME and why could be useful too.