I am 33 years with ME. The systemic bias runs deep. Thank you for this good run down of what has happened from that arena. There is a lot more that the Long Covid advocates need to understand to avoid what happened to us.
1. Advocate for specific criteria for those whose illness can't be attributed to organ damage. The vague criteria of ME/CFS as defined by CDC & NICE leaves the door wide open to continue the program of misinformation that you have written about here.
2. In the US the ICD codes are being used to bury ME. This tactic already in use for hiding those with LC that have post exertion symptom exacerbation. See my blog here:
Fitting that criteria doesn't mean they have ME. It means they need the same medical screening that is recommended in the ME ICPrimer (2012 Carruthers etal)
If patients are not stratified appropriately so researchers know who to research, these newly ill LC patients will follow in our footsteps and be sick for decades. The fastest way to answers is stratification of research subjects so we know what answers apply to which patients.
Don't underestimate the ability of this systemic bias to impede medical care and research. We have seen many LC insist that what they have isn't "ME" because they are "really" sick. That is one more example of how effective this systemic bias has been.
I am 33 years with ME. The systemic bias runs deep. Thank you for this good run down of what has happened from that arena. There is a lot more that the Long Covid advocates need to understand to avoid what happened to us.
1. Advocate for specific criteria for those whose illness can't be attributed to organ damage. The vague criteria of ME/CFS as defined by CDC & NICE leaves the door wide open to continue the program of misinformation that you have written about here.
2. In the US the ICD codes are being used to bury ME. This tactic already in use for hiding those with LC that have post exertion symptom exacerbation. See my blog here:
https://meglobalchronicle.wordpress.com/2023/04/23/burying-myalgic-encephalomyelitis-me-using-icd-codes/
3. Fight for thorough screening. We need to know how many LC patients have myalgic encephalomyelitis as defined by biological experts.
https://sgme.ch/icc/en/
Fitting that criteria doesn't mean they have ME. It means they need the same medical screening that is recommended in the ME ICPrimer (2012 Carruthers etal)
If patients are not stratified appropriately so researchers know who to research, these newly ill LC patients will follow in our footsteps and be sick for decades. The fastest way to answers is stratification of research subjects so we know what answers apply to which patients.
Don't underestimate the ability of this systemic bias to impede medical care and research. We have seen many LC insist that what they have isn't "ME" because they are "really" sick. That is one more example of how effective this systemic bias has been.
Yes. I agree. Wessely's a very skilled manipulator & bully.