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“The meeting will include #MEAction Executive Director, Jennifer Brea, #MEAction’s Director of Global Community & Campaigns, Ben HsuBorger, activists Terri Wilder and Mary Dimmock, patient and scientist, Dr. Becky Taurog, PhD, and patient and immunologist, Dr. Rochelle Joslyn, PhD” ( quote from...

The #MEAction statement is dated Sept 6th and gives a list of attendees headed by Jen Brea. I hope she is doing well currently and does not have to overstretch herself to attend this meeting. It is a hugely important meeting that I hope she can attend but we don’t want our advocates to become...

http://meadvocatesireland.blogspot.com/2018/09/complaint-report-offers-hope-for-those.html I read this a couple of days ago ( have forgotten where but could it be @Keela Too?) and sent it to a family member, and have retrieved it from the email in order to post it here. I think it demonstrates...

@Jonathan Edwards Have been trying to link to the Times article without success but it is at the top of this thread https://www.theguardian.com/global/2018/sep/01/pain-rollercoaster- fibromyalgia-kirsty-young-desert-island-discs With reference to the Times, it is ill informed and gossipy...

https://www.theguardian.com/global/2018/sep/01/pain-rollercoaster-fibromyalgia-kirsty-young-desert-island-discs A very different type of article on fibromyalgia written by a patient. Just read it in the Observer:presume I missed it in the Guardian yesterday. ETA: so totally different from S...

Thank you @Trish. Had just been following this thread. Glad to see it has been picked up. I do think it needs a response.

https://www.thetimes.co.uk/article/kirsty-young-must-go-softer-on-herself-during-break-from-desert-island-discs-2pkjdbfbn This article by Sarah Baxter is on the leader page of the Times today, not as a leading article but as an opinion piece sharing the page with Dominic Lawson. It will get a...

https://www.thetimes.co.uk/article/male-scientists-cut-me-off-after-i-stood-up-for-staff-says-top-biologist-fiona-watt-hbksqh373 Fiona Watt is in the Times again. Good to have background on the Chair of the MRC.

The letter was edited by the Times, specifically the title. Will post if there is any further information on this.

https://en.m.wikipedia.org/wiki/Simon_Wessely ETA: would it be more accurate to say that Simon Wessely is tweeting......?

I have no idea what MEA will be putting in its letter to the Times but I hope it includes something to the effect that this is an inaccurate characterisation of pwme, that we are being traduced. ETA: grammar

Didn’t we have a new member early in the summer, a doctor with ME, who was interested in tackling teaching about ME in the medical schools? She may have attended Forward ME- unsure about that.

It’s showing as that when I checked Amazon about a half hour ago. I wondered whether we had been buying so many it had caused price to drop. My logic may not be logical!

There has been correspondence on the MEA fb page today requesting the MEA to write to the Times about the inaccuracies about patients in Fiona Watt’s statement CS has recently posted the following. “A letter has been sent by The MEA to The Times this afternoon. I will not disclose the...

If I get to the stage of researching this, I’ll come back to you @Alvin

Thank you for feeding back this information. It helps put a context to the situation we are facing in gaining MP support which we need if we get a main chamber debate. There are obviously conventions in place which make it difficult for some MPs to sign. It is not just that we are not working to...

I have received replies from both Ed Davey and Nicky Morgan, MPs. Since we hope to have a debate in the full house, and will need as much MP support as possible, I think it is worth making every effort with MPs. David said that he had contacted them a second time but didn't gain any new ones...

https://www.meassociation.org.uk/2018/08/the-times-call-for-review-of-flawed-me-research-in-lancet-letter-21-august-2018/ I have written a note of thanks to Nicky Morgan, MP, linking it to the MEA report which includes the names of the 10 MPs, and a link to virology blog where the rest of the...

Just to add that my MP is one of the 10 signatories. I have sent him an email with a link to the Times article. Anyone else with a connection to the other 9 who is willing to do this? I can write to Nicky Morgan if we don't have one of her constituents here. ED: one word altered.

Thank you @MEMarge, and for your tips @Milo .