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Link for thread (@Simon M) https://www.s4me.info/threads/what-do-you-think-of-these-photos-to-depict-pwme-in-the-media-help-us-build-a-collection.23430/#post-392542

I’ll believe government support will be forthcoming when I see it. Having said that, securing a meeting with a minister is excellent, well done!

Ground covered at The ME/CFS Stanford working group (taken from the summary text by Ron Davis and Janet Defoe) of :

I can’t make him out to be honest, and I hope he doesn’t really expect Twitter chit chat to be a good way to find out the views of patients on implementing the guideline. @Jonathan Edwards do you know anything about DR Phil Hammond that would make you think he could be worth approaching to...

Thank you, that’s helpful. I agree completely about the lobbying.

I think I was feeling very discouraged yesterday by the consultation comments and the RC’s statements. They do present a daunting edifice and the defence of LP is just so extraordinary and wrong. Today I think it was pointless and probably not wise of me to speculate their motivation. I used...

I very much hope so too, Trish. The dam has to break somewhere at some point. People with ME, especially the children, need so much better. None of my children has ME, though I still fear it now they are grown. 2 of my children have other health conditions that had significant impact for...

Yes, You’re right about all those things @Trish, I wasn’t forgetting at all, though I will admit that I did momentarily forget about the Lightning Process trial. However, as things stand PH is going to continue to run that clinic, he’s not going to be retiring for good. I’m not blind to the fact...

I think it’s understandable that Dr Hammond has responded the way he has, on Twitter, to accounts of harm that come up on Twitter. In the same way that I think it was reasonable for the ME association to ask for emails from those posting, on Twitter, about accounts of harm under the care of...

I didn’t use the word “low”, though yes, that’s a part of it, perhaps for some more than others. I meant their opinion of patients is what fits with what LP is. It’s slippery. I don’t know if the RC spokespeople think LP is quackery, maybe some of them do. I’m assuming that they believe it’s as...

Perhaps it’s simply that those behind RC endorsement of LP hold an opinion of PwME (sorry, CFS/ME) such that a pseudoscience behavioural psychobabble intervention like LP seems good to them. Alternatively Phil Parker knows where the bodies are buried. (Eta metaphorically speaking)

It’s good that you’re doing this. I noticed you make this point in your draft and in the comments of David Tuller’s latest blog: (my bold) It’s a really good point. I hope you manage to finish your letter and send it in, and if you ‘d like to get that done sooner I’m sure members would help if...

Thanks for that, Kitty.

Reposting (I put it in the wrong thread before) with a few minor changes. Perhaps all this will at some future point be seen as a necessary and eventually helpful laying of cards on the table, out in the open where all can see. One can hope? I’m not good at guessing what people are up to or...

Deleted post - wrong thread sorry!!

Well that’s interesting. One of the symptoms I had whilst covid infected was earache. It was a stabbing pain occurred just over a couple of days and then just stopped. This reoccurred a few times over the next 6 months as short bouts of the same stabbing pain that would come and go in less than...

Website : https://www.richmondandkingstonmegroup.org.uk/ Also from their home page:

Just posting the link onto this page: https://crowdfund.berkeley.edu/project/27513 $57,909 90%

I very much agree with JE. I think it would fairly quickly be apparent which of them are really interested in developing well evidenced practice. These things are a process and you’ve got to start somewhere.

Edit - removed unnecessary section (brain fail) In the clip above of Dr Khan on BBC news he says that “a simple bedside test called a venous oxygen saturation can demonstrate how ill we are” For those like me who don’t know what that is: https://www.ncbi.nlm.nih.gov/books/NBK564395/