Thanks again Colleen for a very informative piece.
As you know there’s a lot happening here in the UK , 3 women with very severe ME in hospital, we’ve had a ME debate at Westminster Hall recently & we’ve also got a review of PIP which is a disability benefit.
Personally speaking, I feel the days of awareness do need to continue but there are deeper more systemic issues that need addressing & that’s even harder to achieve.
I think we can all agree that the PACE trial did no favours at all worldwide & sadly we’re still reaping the repercussions of it now. Just looking at the Long Covid journey, I can already see the exact same things happening that were done to pwME.
It all feels a jumbled mess and I’m not sure where we should start. Obviously we’ve been concentrating on the 3 women in hospital predominately because all 3 have been psychologised. Thankfully now for Millie, her Drs have finally accepted a ME diagnosis having brought someone else in to assess her, but it’s been a massive fight & we have The Chronic Collaboration https://thechroniccollaboration.com/news/to thank because the ME charities were not getting involved which we all find puzzling.
The biggest shock for me is Drs not taking any notice of the NICE guidelines but rather following their own beliefs or seeking a charity called BACME which is for HCP only & it’s quite alarming at some of the things they are suggesting. Read this article for more information https://thechroniccollaboration.com/bacme-conference-2024/
So, to round up I feel that we have to concentrate on uprooting the things at a deeper level rather than just solely focusing on awareness. Easier said than done I know especially predominantly from a cohort of very ill people being the driving force behind change. Let’s keep hope alive.
Thank you Fiona. I really appreciate you taking the time to share the important work of the Chronic Collaboration and what is happening in the UK. I have been disturbed by what is happening there with Millie and the others. I hope others will read your comment!
Hear hear Colleen and thanks for all you've done over the years (decades!). I'm grateful for all that's gone before and all that's happening these days. We feel so near and yet so far, still. Sigh.
Thank you for sharing this information. I and my husband have had ME/CFIDS since 2013 and I continue to feel the rage and anger over the medical neglect and incompetence around this illness. I I can only hope there are more researchers interested in solving this in the coming years, but looking back at the history, it's so easy to get discouraged.
Thanks for this informative look.
You always have great insight. It’s frustrating to see the lack of true progress.
Thanks Bazia. It is frustrating...
Thanks again Colleen for a very informative piece.
As you know there’s a lot happening here in the UK , 3 women with very severe ME in hospital, we’ve had a ME debate at Westminster Hall recently & we’ve also got a review of PIP which is a disability benefit.
Personally speaking, I feel the days of awareness do need to continue but there are deeper more systemic issues that need addressing & that’s even harder to achieve.
I think we can all agree that the PACE trial did no favours at all worldwide & sadly we’re still reaping the repercussions of it now. Just looking at the Long Covid journey, I can already see the exact same things happening that were done to pwME.
It all feels a jumbled mess and I’m not sure where we should start. Obviously we’ve been concentrating on the 3 women in hospital predominately because all 3 have been psychologised. Thankfully now for Millie, her Drs have finally accepted a ME diagnosis having brought someone else in to assess her, but it’s been a massive fight & we have The Chronic Collaboration https://thechroniccollaboration.com/news/to thank because the ME charities were not getting involved which we all find puzzling.
The biggest shock for me is Drs not taking any notice of the NICE guidelines but rather following their own beliefs or seeking a charity called BACME which is for HCP only & it’s quite alarming at some of the things they are suggesting. Read this article for more information https://thechroniccollaboration.com/bacme-conference-2024/
So, to round up I feel that we have to concentrate on uprooting the things at a deeper level rather than just solely focusing on awareness. Easier said than done I know especially predominantly from a cohort of very ill people being the driving force behind change. Let’s keep hope alive.
Much love
X
Thank you Fiona. I really appreciate you taking the time to share the important work of the Chronic Collaboration and what is happening in the UK. I have been disturbed by what is happening there with Millie and the others. I hope others will read your comment!
Hear hear Colleen and thanks for all you've done over the years (decades!). I'm grateful for all that's gone before and all that's happening these days. We feel so near and yet so far, still. Sigh.
Thank you Andrew... I agree... so near and yet so far...
Thank you for sharing this information. I and my husband have had ME/CFIDS since 2013 and I continue to feel the rage and anger over the medical neglect and incompetence around this illness. I I can only hope there are more researchers interested in solving this in the coming years, but looking back at the history, it's so easy to get discouraged.
I think there are more effective researchers now which makes me more hopeful.