Thank you for sharing this personal account - sending very best wishes for the next steps. You shine a light into dark places with insightfulness and professionalism. ThereForME brings hope and a breath of fresh air.
Also sending you best wishes for what I hope will be some kind of respite. The lack of understanding of what constitutes exertion and of how debilitating the resulting PEM can be is a huge barrier to appropriate support and care. To have these needs framed as preferences must be deeply frustrating and depressing.
So well set out Karen. It is staggering and incredibly disappointing that so- called health professionals can assess a situation so incompetently, and with a seemingly total lack of any compassion. Having seen James suffering so much I can't imagine how anyone could be more deserving of support than he and you are in this dreadful situation. We so hope that the appeal goes through positively and are so grateful to you for your sterling advocacy. All our love xxx
I'm very sorry James is still suffering so badly. Like me, he has long COVID, and I am bedbound too. It's a vascular disease that affects every organ in the body. Where blood goes, Covid goes, destroying everything in its wake.
Hello, the ME Association are looking for experiences of anyone who has tried to obtain CHC funding for ME/CFS. Thought some readers might have experiences they would like to share
Hi Karen, thank you so much for sharing your story about the struggle you are facing getting CHC funding for your husband.
I would be very interested in sharing my story regarding attempting to secure this funding for my elderly father who suffered devastating long term effects from a Covid infection around 3 years ago.
Also, I thought this article about NHS trusts paying private companies to cut CHC funding might be of interest to you and many of your readers?
I'm so incredibly sorry to hear what you and your husband are going through — both in terms of health and also the umerited battle NHS.
You wrote: "Let me blunt: everything about how the NHS handles ME is broken." I'd go one further and say that the NHS is unfathomably, cruelly negligent with the way in which they view and 'treat' people with M.E.
I'm reminded of this quote that perhaps those in the upper management sector of the NHS need to be reminded of (sorry, it's been a long week, and my brain is not co-operating well):
"They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy."
-- Dr. Nancy Klimas, ME researcher and clinician, University of Miami
Continuing Healthcare funding is near impossible to get for the majority of people who need it. My father was in a nursing home with multiple health conditions and he couldn't get it. I've read of others in similar circumstances who couldn't get it either.
So sorry for what you’re both going through and thanks you for your incredible perseverance in keeping up the fight for all affected by ME and LC . Good luck with the appeal 🙏
Thank you for sharing this personal account - sending very best wishes for the next steps. You shine a light into dark places with insightfulness and professionalism. ThereForME brings hope and a breath of fresh air.
I’m so very sorry to read this Karen. I don’t know how you’re still standing after the battles you have had.
Ironically CHC funding is advertised on television making it look so easy to apply and get the assistance one requires.
I hope and pray that you can appeal this decision and receive the care that you both require.
Sending you both much love.
Fiona X
Also sending you best wishes for what I hope will be some kind of respite. The lack of understanding of what constitutes exertion and of how debilitating the resulting PEM can be is a huge barrier to appropriate support and care. To have these needs framed as preferences must be deeply frustrating and depressing.
I’m so sorry Karen and so disgusted. I believe the answers are found here.
By Sam Pearce
https://www.dailymaverick.co.za/article/2023-07-17-collusion-to-exclude-long-covid-the-long-history-of-energy-limiting-disability-denial-by-insurance-firms/?fbclid=IwAR3yHMwOg2mMdfzQh4__yzonj74703ciN-UE_1jzVmSNRCVvdpuT2Iu71pQ_aem_Abre0NqRgsdQkRVRdZue_ctD40r755p-nxhcSU1M3IobNFlDhXSaAPe4Au4WrrrmVKo&mibextid=Zxz2cZ
So well set out Karen. It is staggering and incredibly disappointing that so- called health professionals can assess a situation so incompetently, and with a seemingly total lack of any compassion. Having seen James suffering so much I can't imagine how anyone could be more deserving of support than he and you are in this dreadful situation. We so hope that the appeal goes through positively and are so grateful to you for your sterling advocacy. All our love xxx
I'm very sorry James is still suffering so badly. Like me, he has long COVID, and I am bedbound too. It's a vascular disease that affects every organ in the body. Where blood goes, Covid goes, destroying everything in its wake.
Thank you so much for fighting for people with severe snd very severe M.E
Hello, the ME Association are looking for experiences of anyone who has tried to obtain CHC funding for ME/CFS. Thought some readers might have experiences they would like to share
https://www.facebook.com/meassociation/posts/pfbid02VAxo3qPxf4BqHJT5qN5GeJMA3U83SpzDenVrbpQiymmS8c28Gzi6BJxR8hkST38Jl
Hi Karen, thank you so much for sharing your story about the struggle you are facing getting CHC funding for your husband.
I would be very interested in sharing my story regarding attempting to secure this funding for my elderly father who suffered devastating long term effects from a Covid infection around 3 years ago.
Also, I thought this article about NHS trusts paying private companies to cut CHC funding might be of interest to you and many of your readers?
https://archive.ph/B8Q6C
I'm so incredibly sorry to hear what you and your husband are going through — both in terms of health and also the umerited battle NHS.
You wrote: "Let me blunt: everything about how the NHS handles ME is broken." I'd go one further and say that the NHS is unfathomably, cruelly negligent with the way in which they view and 'treat' people with M.E.
I'm reminded of this quote that perhaps those in the upper management sector of the NHS need to be reminded of (sorry, it's been a long week, and my brain is not co-operating well):
"They [ME/CFS patients] experience a level of disability equal to that of patients with late-stage AIDS and patients undergoing chemotherapy."
-- Dr. Nancy Klimas, ME researcher and clinician, University of Miami
Continuing Healthcare funding is near impossible to get for the majority of people who need it. My father was in a nursing home with multiple health conditions and he couldn't get it. I've read of others in similar circumstances who couldn't get it either.
So sorry for what you’re both going through and thanks you for your incredible perseverance in keeping up the fight for all affected by ME and LC . Good luck with the appeal 🙏