Well, here’s Professor Holgate’s response to our recent email. Do I feel heard? No. What about you?
Dear Spoonseeker (I am not sure whether this is the correct title but I hope this reaches you all),
Thank you for your email. We all recognise the concerns that are held about the MEGA Project and value your input. We are very appreciative of the enthusiasm being shown to pursue an exciting ‘omics-based research project in the field of M.E. and the issues that you have raised. We are soon (next week I hope) will be issuing a description of what MEGA comprises on a new website and will also have a frequently asked questions (FAQ) page which will be regularly updated. The latter is aimed at addressing the majority of questions that have been raised in your and other emails through the FAQs. Involvement of people with M.E. at the core of MEGA will be essential through an Advisory Group of people with M.E. and their carers.
As yet the first grant outline has not yet been submitted. We will do our very best to create the most competitive application, but even with this there is certainly no guarantee of funding. Please be assured that we will definitely involve the M.E. community in the proposal. As you will have noted I have brought the very best scientists from across the UK to assemble this application. It will be a real team effort. We need everyone’s support to help with this otherwise it will fail at the first hurdle.
Thank you again for expressing so much interest in our endeavour. Finally, I should add that I am not a CFS/M.E. researcher myself but someone who has realised we must make inroads into the causes of this (these) distressing and serious disorders.
Best Wishes,
Stephen.
Professor Stephen T Holgate CBE, FMedSci
MRC Clinical Professor of Immunopharmacology
spoonseekerdotcom 
The deaf MEGA juggernaut rumbles on, blindly, and, if people don’t get out of the way, they will be squashed like flies and not even noticed.
We ought to be calling for CMRC to be wound up: they are only interested in extracting money from MRC to keep their labs/departments in finance, and their eyes are on the cash: not us: the particular disease is just leverage, and the petition was no more than leverage gathering. Holgate is not an M.E researcher: he’s just managing the business of laboratory financing. The new web site will just be another PR outlet managed by SMC.
Sad to see it in writing, but I don’t think that anyone will be surprised by the brush off.
The arrogance of these people treating patients as mere flies round their heads as they keep their eyes fixed on the money!
😦
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It must have been a standard letter, I think. I can’t imagine how he could possibly motivate himself to write so much saying so little to everyone who has contacted him. Or maybe he thought with there being so many of us we deserved an extra portion of twaddle.
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Well the letter has had a longer reply from him that my own personal letter received, thats the only positive thing i can say about this……. the amount of effort you put into your submission, the number of co signers who read it & joined. This non response is absolutely disgusting.
And as standard he doesn’t even mention Esther Crawley or P W names, they really have become “the unmentionables” protected by CMRC MRC SMC blubber from any dangers thrown their way
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So you got a shorter letter? That tends to confirm we were granted additional twaddle on account of our extra numbers. Bad luck on you, though, Amy. You had *two* letters to read…
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They will always fail if they don’t bother to build trust.
Ask him why he thinks making an effort to build the trust of the community isn’t important.
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I think he’s banking on all the less well informed patients who will only read their Action for ME or AYME magazine and assume they can put their trust in a national patient charity.
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tl:dr version
Dear Sir:
No.
Bye now.
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Your version says just as much in fewer words. I think I dislike it a lot less.
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It seems like a generic response, which on the plus side may mean he’s swamped with such correspondence. I’m trying very hard not to read this as “Don’t worry your pretty little heads…” But a reply acknowledging at least some of your points was due, and would have been worth waiting a few more days for. He can’t not see the strength of feeling now. Thank you so much for trying, in any case.
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I think ‘don’t worry your pretty little heads’ pretty much sums it up. Either that or ‘lots of insect life in here – where’s the spray?’ As I’ve mentioned elsewhere though, I had little hope that our letter would influence Holgate. I just hope some of the Omics scientists who were copied in took note.
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Standard PR twaddle!
You took such trouble to construct an informative and grammatically correct email, Spoonseeker!
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Yes, thanks, I think it was a good letter we sent. Unfortunately it doesn’t seem to have gone to a very good reader.
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This is disappointing: platitudinous and patronizing. They don’t seem to want to listen.
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Yes, I’m left with the impression that he’s rather amused we’ve gone to so much trouble in a hopeless cause.
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Sounds like a standard PR letter to me. Doesn’t answer anything and given that you/we were directly commenting and asking questions, it’s a bit off (to put it mildly) to just say wait until the press release along with everybody else. It says “we recognise your concerns” but does absolutely nothing to answer or address them.
Add that to the reply from the BBC to Countess Mar about the EC interview and all we are being given is just political waffle.
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Yes, Holgate and the BBC have gone pretty much neck and neck on the waffle, I’m afraid. It’s been one of those days. Just have to keep chipping away, I guess. Their viewpoint has no foundation. It can’t stand for ever.
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Someone (Tom Pride) on a different subject has noted that a retired geology professor who wrote papers criticising fracking is being attacked in the press too. Pride says the company involved has links to the aristocratic Percy family, and is pursuing a ‘royal contacts’ line, but I would not be surprised if SMC is behind this too. It has all the hallmarks.
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I am furious with Holgate who has fobbed us off and feel I have sufficient”evidence” which should be used against his abdication of responsibility with the MRC/ Collaborative; he will need to be held to account!
I have sufficient “ammo” to show he is the “worm that turns”……….
A salient and timely reminder of saying one thing but doing another!
`A Colloquium on ME/CFS and Fibromyalgia – Putting the Patient at the Centre’.
Feb 12th 2008. At Southampton General Hospital.
This conference brought about because patients, public and the Gibson Report highlighted the need to understand the science and to find new and better ways of diagnosis and treatment. Themes of the day: to hear the patients’ voice – better relationships with doctors, better management of the illnesses, and to secure dedicated funding.
The conference was “hosted” by Professor Stephen Holgate, professor of clinical pharmacology at Southampton University, who has just been named ( 2008) as chair of a new multi-disciplinary panel set up by the Medical Research Council which will focus on the subt-ypes and aetiology of ME/CFS as part of a plan to fertilise cross-disciplinary research activity in this field.
In 2008, I wrote, “I recorded Professor Holgate’s introductory speech, more as an Aide Memoire. Also, I thought it useful to be able to hold Pro H to account in the future!!!……………………”
I have both original recording, transcript and official DVD…….
“After the lectures, in the second half of the afternoon we gathered into Groups and then pairs to give our opinions and answers to a set of questions. When these were presented, there was considerable agreement. What did we want?
– Better informed doctors, especially GPs. – Physicians who are concerned and willing to investigate to get to the bottom of the problem earlier.
– Dedicated funding for proper scientific, biomedical research. (no more money for psychological research).
– At least the same Benefits and help as that given to other disabled people – and this without the current prejudice.”
So what has been achieved and where are we now……?
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http://www.bbc.co.uk/programmes/b082hg9g#playhttp://www.bbc.co.uk/programmes/b082hg9g#play
“Dear Professor Holgate”,
I listened with some interest and some admiration at your impassioned statement on the health impacts of air pollution, an issue close to my heart for some time and for which we share a mutual concern; likewise health impacts from agriculture spraying and on human exposure from organo phosphorus chemicals which are cited as one of the possible impacts on causation of ME through gene expression. You stated in your recent reply here that you are not an ME researcher, BUT, you are cited in the Jonathan Kerr welcome research paper on this topic. Would that your passion and commitment in moving things forward on air pollution impacts could be replicated in the issue of ME Research and that youcoyld and would refocus within your MRC capacity to what you stated you were committed to in 2008, that is, sub groups and aetiology. Please stop flogging the FINET MAGENTA horse.
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