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.
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.
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 🙏