Search results

This article was an absolute revelation - thank you to those who spotted it. Some CBT and ACT techniques have been really helpful, and DBT was life changing, and should be taught in schools, IMO. None of those have anything to do with ME or LC though - except for the rats nest of MH issues that...

Yes...I spotted that,but you can't edit tweets and it is getting s LOT of interactions

On it. You made some very good points

Thank you. We have been in conversation with our previous MP for 7 years and he new one for a good few months now as where we are is only ever a two horse race. yes, we have been doing similar. Hopefully if enough of us are saying the same thing it will get through Interesting point. I...

I am interested as to what you would do differently and if you are able to share your original letter? As we have a whole new batch of MP's to get in touch with so there are a lot of "blank slates" to potentially contact.

Thank you :thumbup:

I am very curious about this as I appear to have issues with reactive hypoglycaemia. I spoke to my GP about it 8 years ago but appear to not have been using the right words as they had no idea what was causing it. A sudden recent reoccurrance of it led me to do a quick Google and.. I found it...

This is excellent. Thank you again for writing it. Spoons well spent!

2nd draft, excellent work. Thank you for speaking up Possibly add a suggestion to consider the number of comments under the article of people's lived experience.

Amazing and heartbreaking book. I await the ME version with utter sadness and horror that nothing was learned. Not a damn thing. Well, not by the medical community, at least.

Yes! How do we make this happen? Seriously? I am willing to write letters, have (virtual) meetings etc.

This. I want to scream this from the rooftops. People are dying horrible, awful, preventable deaths and the main charity is spending precious research funding on... another questionnaire.

Ah, yes, the "Bad Patients" who dared to do their own research, and speak to other patients in those pesky support groups, and then dared to ask questions like "hang on a minute..". Absolute militants! And worse still, had the absolute temerity to not get better. No, we don't want those ones...

As one of the authors of the letter, the answer to that is to reply and say actually no, it hasn't provided any reassurance, in fact, the exact opposite. It is frustratingly disappointing, as this is the same information that has been provided to anyone who has asked for the last two years. And...

Wow. Plus ça change..

What was the report prior to Rethinking ME? The Gibson inquiry?

It's the paperback. The hardback came out in 2022

Am I the only one thinking that we might want to be writing to Dr Henrietta Hughes?

I have an annual asthma review and am asked "does your asthma stop you from doing any activities" To which my answer (often said in unison with the previous asthma nurse who had known me a long while) "no, but my ME does" My practice as a whole understands/ accepts that I have ME, mostly...

This is a really good point. None of this should be in any way antagonistic, it should be completely collaborative.