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Like @WillowJ and @Milo I have breathing/SOB/air hunger problems. However, this is a ‘new’ symptom, started in last 2-3 years - usually involving stairs, steep slopes (we live on a ‘hill’ - I walk around the block sometimes) or after more activity than I can really manage. ETA ‘Air hunger’

My final selection, with grateful thanks to everyone here, but especially @Andy and @lunarainbows, in helping me clarify my thoughts :) Diagnosis: 11. How can the current approach to diagnosing ME/CFS be improved, to reduce delays and include other conditions commonly linked to ME/CFS, such as...

Cambridge group will also investigate

I have alerted Cambridge Group about this webinar via Twitter.

Thank you to everyone sharing their selection choices. I particularly like @lunarainbows explanation regarding her choice of Underlying Mechanisms, that makes a lot of sense to me now. My printed out Long List looks a bit dog’s eared as it has travelled up and down the stairs daily with my...

For any transcript writer - this provides the link to the session relating to Evelien’s petition

I was very pleased to hear Lady Cumberlege questioning Lord Kamall in the HoL about the Pause by NICE. She would be an excellent ally for PwME after her important work on the IM&MD safety review (/Cumberlege Report). I am sure she must already have quite a lot of knowledge about ME because I...

I have been sharing your article for the Healthwatch Newsletter - it has been incredibly useful, thank you @Caroline Struthers

I have recently been sharing both of the petitions (one international, one Gov.uk) calling for a mechanism to report harms. I returned to all my gathered ‘Yellow Card’ info and came across your work again Caroline. Did you ever get a reply from the APPG and/Or Lady Cumberlege @Caroline...

I emailed the Online “Digital Editor” on 3 November asking whether typographical errors could please be corrected. No response yet.

He was the former minister, so would have known more of the history.

One amongst thousands of messages for NICEComms. But it’s the sort of thing that NICE should be funding as a very minimum, when Guidelines are published :banghead:

I expect she is aware @Barry . Baroness Ros Scott of Needham Market is a member of Forward-ME and would be keeping her colleagues updated on any work going on in the House of Lords. https://me-pedia.org/wiki/Baroness_Scott_of_Needham_Market

Found this on twitter

I was going to have a listen to the presentation on Saturday first.

Thank you all for the hard work and effort put into composing the letter :emoji_bouquet:

x 3 @Dx Revision Watch :emoji_bouquet:

Because of the current NICE Guideline (2007 :() I would think it highly unlikely that any patient has recently been diagnosed with M.E. in England @Arnie Pye The Lead GP in my practice still calls this condition ‘chronic fatigue’ :banghead:, although to be fair, he talked with me about the...

:) :emoji_clap::emoji_clap::emoji_clap: @Invisible Woman I also experienced the ‘chronic fatigue’ usagewith the senior partner of our GP practice during the ‘Group 6 issue’ earlier this year. Every time he used cf, I repeated ME/CFS. I will remember to be more assertive next time!