Thank you notes? Seriously?? And STILL not taught in medical schools. What do we have to do to prove we are in need of help? That we are not just a subset of COVID? Thanks for your work in putting this information all together.
Truly appreciate your work Hillary. Reading Osler’s Web in the early years of my illness opened my eyes to the terrible truth. I’m grateful and share this knowledge at every opportunity with hope the scales will fall from people’s eyes.
I shared your article to X, flagging the Australian health minister Mark Butler, Emerge advocacy group and powerful allies George Monbiot & David Tuller.
Australians finally have funding to create new guidelines affecting ME, CFS & Long Covid cohorts and we MUST avoid the mistakes of the US.
I'm sorry to say it but Australia was making plenty of the same mistakes in decades past, with Australian shrinks entering into collaborations with the US CDC. Australia was the first country, after the US, to officially drop myalgic encephalomyelitis and adopt chronic fatigue syndrome. Australian shrinks pushed the psych propaganda for years in Australia. Look up "Australia" in Osler's Web and you can read all about it. Australia also had an amazing national patient organization at the time, however, among the very best: the Alison Hunter Memorial Foundation, established in 1998. The foundation was named for an Australian teenager who died of ME at 19 in 1996. It was founded by her amazingly brave mother, Christine, who died in 2003.
Thank you Hillary for these stats. It continues to be so incredibly disturbing to think that decades have gone by and the CDC and NIH have done absolutely nothing to determine the cause of this illness. Their hand is probably being somewhat forced now to make it look like they're trying to do something due to the number of individuals with Long Covid. I'm not a doctor, but it doesn't take much to put two and two together, so I agree that the CDC and NIH most likely have no intention of ever trying to seriously figure out ME/CFS. With both my husband and I having ME/CFS and with my recent diagnosis of Myasthenia Gravis, I've done some additional reading and have found articles regarding viruses and autoimmune diseases (see links below). It sounds like some cases of ME/CFS are ICL (or non-hiv AIDs) cases. In 2005, Tulane University researchers looked at ICL patients with autoimmune disease and found a retroviral particle called HIAP-II. Why was there no further research done on this?? Did somebody intentionally stop the research?? Perhaps this is what Elaine DeFreitas found back in the 80's? It appears to me that much of the work has already been done. Why can't they pick up where these researchers have left off and run with it?
Some ME patients were also identified as ICL patients as long ago as 1991. Anthony Fauci asked MDs to report ICL cases to him. ME expert Paul Cheney dutifully reported about forty of his ICL patients, accompanied by supporting lab data, to Fauci, but the NIAID chief never responded.
Terrific article Hillary! I can see why the government is being so resistant to tackling this huge problem. It will lead to a huge increase in Medicare costs, Medicaid costs, and research costs as well as costs to the Social Security's Disability program (not that that is a justification!). Keep after the bastards.
Thank you notes? Seriously?? And STILL not taught in medical schools. What do we have to do to prove we are in need of help? That we are not just a subset of COVID? Thanks for your work in putting this information all together.
Truly appreciate your work Hillary. Reading Osler’s Web in the early years of my illness opened my eyes to the terrible truth. I’m grateful and share this knowledge at every opportunity with hope the scales will fall from people’s eyes.
I shared your article to X, flagging the Australian health minister Mark Butler, Emerge advocacy group and powerful allies George Monbiot & David Tuller.
Australians finally have funding to create new guidelines affecting ME, CFS & Long Covid cohorts and we MUST avoid the mistakes of the US.
I'm sorry to say it but Australia was making plenty of the same mistakes in decades past, with Australian shrinks entering into collaborations with the US CDC. Australia was the first country, after the US, to officially drop myalgic encephalomyelitis and adopt chronic fatigue syndrome. Australian shrinks pushed the psych propaganda for years in Australia. Look up "Australia" in Osler's Web and you can read all about it. Australia also had an amazing national patient organization at the time, however, among the very best: the Alison Hunter Memorial Foundation, established in 1998. The foundation was named for an Australian teenager who died of ME at 19 in 1996. It was founded by her amazingly brave mother, Christine, who died in 2003.
https://web.archive.org/web/20171027131328/http://www.ahmf.org/aboutus.html
Thank you so much for your relentless honesty and tireless efforts to shed the light of truth on this horrible situation
Thank you Hillary for these stats. It continues to be so incredibly disturbing to think that decades have gone by and the CDC and NIH have done absolutely nothing to determine the cause of this illness. Their hand is probably being somewhat forced now to make it look like they're trying to do something due to the number of individuals with Long Covid. I'm not a doctor, but it doesn't take much to put two and two together, so I agree that the CDC and NIH most likely have no intention of ever trying to seriously figure out ME/CFS. With both my husband and I having ME/CFS and with my recent diagnosis of Myasthenia Gravis, I've done some additional reading and have found articles regarding viruses and autoimmune diseases (see links below). It sounds like some cases of ME/CFS are ICL (or non-hiv AIDs) cases. In 2005, Tulane University researchers looked at ICL patients with autoimmune disease and found a retroviral particle called HIAP-II. Why was there no further research done on this?? Did somebody intentionally stop the research?? Perhaps this is what Elaine DeFreitas found back in the 80's? It appears to me that much of the work has already been done. Why can't they pick up where these researchers have left off and run with it?
https://pubmed.ncbi.nlm.nih.gov/16276517/
https://www.autoimmune.com/Non-HIVAIDSGen.html
Some ME patients were also identified as ICL patients as long ago as 1991. Anthony Fauci asked MDs to report ICL cases to him. ME expert Paul Cheney dutifully reported about forty of his ICL patients, accompanied by supporting lab data, to Fauci, but the NIAID chief never responded.
Terrific article Hillary! I can see why the government is being so resistant to tackling this huge problem. It will lead to a huge increase in Medicare costs, Medicaid costs, and research costs as well as costs to the Social Security's Disability program (not that that is a justification!). Keep after the bastards.
Dave
Thanks, David. You would of course see to the heart of the problem!