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The argument that GET is only harmful if carried out by the wrong person or in the wrong way goes back to the collaboration between the PACE doctors and AFME. Here's a link to a letter in the BMJ co-authored by Prof Sharpe and Sir Peter Spencer (who was then the new CEO of AFME) in 2007...

It's an interesting article "...However, fatigue was common even without these symptoms and Professor Leeners said this is likely to be down to the repeated inflammation caused by endometrial lesions activating the immune system." but I'd have more faith if she said how she intends to treat...

Good point Trish, Do we know the method that this trickles down into brain cancer research from the Govt? (and a p.s. to my original post I think it would be easier to raise funds for a MEAction UK organiser if we knew of a clear plan of action that had an end result in one campaigning area...

I'm not sure how forcing the UK government to step up is going to fund any new research? We keep getting told that they don't control the MRC. Would be interested to here how MEActionUK thinks we can achieve this very worthwhile (and well worth funding) objective?

Mithriel, I am so sorry that you are crying. I'm wondering how much we are going to gain from the 3 hour debate and just how brave the MP's are going to be. We do need the truth told but that would mean examining the way successive governments have colluded with the DWP, Unum and people like...

Not being able to name the date of a sudden onset isn't the same as there not being a sudden onset. Mine was sudden but I have no diary back to that point or any medical records with the date written down. I difficulty even remember the year. It's a bit like being asked for an alibi in court...

Thank you so much. It makes total sense now. I'd been mistakenly reading as a briefing for this specific event and not as a general paper for any MP and coming from the Unrest screening (which MPs did attend)

Can I take from this that MEActionUK decided themselves that Carol Monaghan needed a briefing, that it was not requested by her and that MEActionUK chose the other charities to help produce it? How did MEActionUK "identify the need for the briefing"? When did they decide to use other charities...

That's why it would be interesting to see this repeated in the UK CFS ME biobank as this contains severe patients as they have been going to people's homes to take bloods.

I think I went to the last ME debate in Westminster Hall in 2011. There are rows of seats at the side just through the door from memory for visitors. Problem is that large groups of students or tourists visiting the building can swoop in and take them all...

Don't know how common it is but when I saw Oxlate I thought of this http://www.dailymail.co.uk/health/article-2174474/The-GP-gave-fruit-veg-cure-aches-pains.html (p.s. I do best with low fruit and vege)

Does it point to Osteoarthritis or anything else?

I think IiME will be in a good position to know when the battle is won but it's a good idea to ask ourselves how we will know. From my position this springs to mind (but sure to be more) 1. The current science around ME is taught in medical school and older doctors are re-educated 2. We have...

Did Carol Monaghan ask for a briefing paper and if so, who did she ask and was she reading from the briefing paper in her speech yesterday Is there a copy of the briefing paper to read anywhere This would just help me to understand a little - does anyone know?

I wonder if this is where she is speaking? (and if so I can't see where it is televised as only the main chamber seems to be on TV and the online versions shows the house of lords and westminster hall as well) 2.30 pm Backbench Business - Oral Evidence Session Proposals for backbench debates...

Maybe it was through ForwardME or the APPG? There has been talk around a card similar to the one to report drug side effects to be used for GET harms. I heard this mooted at the APPG but a long time ago now.

It's a real pity that we couldn't have had a better summing up at the end to see if they included the salient points. Wasn't enough time to do justice to all the different topics raised though. The draft Scope didn't bare any resemblance to the issues raised by my group in the first meeting. It...

I wish there was some way to talk about how vaccines could possibly trigger health problems without there being an "antivax" undercurrent. I've got "no horse in this race" and genuinely interested in how and if this could happen. We are seeing in local ME support groups an increasing number of...

Their transport costs would have been covered. I gather that they are a "two man band" type husband and wife team. Maybe networking or to spread news about their work? At least they weren't pushy