Following yesterday’s emails to Prof Holgate, Chair of the CMRC, and Sonya Chowdhury of Action for ME, Leeds ME Network has received short responses from both of them including a bit of encouraging news.
Prof Holgate said: “The preparation of the initial outline for this grant is very much ongoing. I am sure the applicants will be as inclusive as possible, and I am already aware of a discussion of how to include very severe house-bound patients. Finance will be a limiting factor.” He says he will pass the email on to those involved in preparing the grant outline.
Sonya Chowdhury said she would leave it to Prof Holgate to respond on behalf of MEGA but was able to confirm the following:“There has never been any suggestion that individuals for the patient advisory group will be Action for ME recruited; indeed I believe I have tweeted to this effect. We completely expect the group to be representative and recruited transparently.”
So, two pieces of encouraging news: about the housebound patients and the recruitment of the patient advisory group. I’m a bit concerned, though, about yet another mention of the limitations of finance when the severely affected are mentioned. This is a massive study with 12,000 patients seeking finance in excess of £5m. Surely with so much invested, we can make sure that the severely affected are adequately represented…
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If finance is a limiting factor to including severely ill patients one absolutely must limit the study to only severely ill patients, as they will provide the most valuable information. The thought that these ought be limited for financial reasons bespeaks that Prof. Holgate, however revered, does not understand the problems that need researching. He needs more tutoring. Meanwhile, the thought that either White or Crawley may be within two miles of this project is obscene. In PACE and SMILE both have shown themselves to be totally incompetent and unscrupulous researchers who operate far outside the protocols of science. Including them is akin to making Donald Trump Archbishop of Canterbury.
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Totally agree with deboruth.
I am so angry that Holgate talks about the inclusion of severe patients being limited by finance.
This says a lot about the whole project and MEGA to me.
The trial should start with severe patirnts and include less severe patients to make up the numbers.
This, for both scientific and moral reasons.
It is the severe patients who are dying, is it not?
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Thanks for your comment, mulig4. As you say, “It is the severe patients who are dying, is it not?” We’ll quote that to Prof Holgate.
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The recurring mention of finances is strange and worrying. A project that’s slightly smaller but really well-designed would be best, so why not do that? There’s more than one really good reason for severe patients to be a priority.
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PS At least there’s a ‘discussion’ about including severe patients, let’s hope they do make that happen…
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I think they’ve taken on board that we need to make it happen, but the impression given is that they’ll try to do it with as few severe patients and as little data collection as they can get away with. That may not in fact be the case but it’s the impression they’re giving. They’ll use finances and the difficulty in testing very ill patients as excuses. The latter is a genuine concern but they can tackle the problem if there’s a will to do so. Prof Newton’s team can advise based on their own experience. And as for the finances, I think we’re all agreed that the severely affected should be top priority, not an afterthought.
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Thanks for your comment, Deboruth. Leeds ME Network will be writing back to Prof Holgate to make various points, the importance of the severely affected being chief among them. We intend to stress, too, the importance of the long term moderately affected who will also be largely excluded if most of the patients for the study come from the clinics. Efforts need to be made to access patients from the wider community so that ‘selection bias’ doesn’t lead to misleading results. A strong patient advisory group to keep an eye on Prof Crawley is vital.
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The most disturbing thing I find about the MEGA study is; that it appears to b Esther Crawely’s baby something she discussed as long ago as 2012 and she seems to be in charge. She will not be doing anything that is not to her advantage, so why is she doing it? Surely not to disprove everything she has previously advocated!
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“Why is she doing it?” A good question to ask. Part of the reason may be that she seems to have an insatiable appetite for research – and apparently great success in obtaining funding. The words ‘ego’ and ‘trip’ spring to mind…
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My thoughts exactly.
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I can’t trust these people to look after #pwme. They have done to much “Damage” all ready! . They don’t understand M.E. To help #pwme We NEED true understanding compassionately caring doctors, who respect #pwme. Where is Simon wessely says?. They’ve taken ME & lied for tomany years. And no consequences to them. I am very upset & angry with these people to have any say in ME life.
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Yes, very important to have strong patient advisory group to ensure Profs White & Crawley don’t wreck this. I’m told Prof Holgate has good understanding of how much damage PACE has done so that’s reassuring at least.
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