Countrygirl
Senior Member
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Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I was one, @Oscar220 and a number of other patients attended various groups.Does someone have a very short breakdown of who was part of these working groups, what the eventual plans and outcome might be and whether there'll be interference from the FND groups?
Hi Countrygirl,Here is the government's survey that accompanied the Delivery Plan for us to fill in.
https://onedrive.live.com/view.aspx?resid=CB2C4502C6DE2B56!1937&ithint=file,docx&authkey=!AAYKJmsBQ2FzgTU&fbclid=IwAR1NfHCz4ubp9bXLSC73MXm66B78ur76zPEwzQCuGkeAUfjHzzOltt2ddQc
This comment from reddit is a gem, comparing detrimental medical approach in CFS to similar one in diabetes:Read through the comments and look at the upvoted comments made by UK doctors here:
The response of doctors to this shows training isn't going to be enough.
Fortunately, in the US, patient rights groups stood up for CFS patients to force the gov to accept the research showing a physical cause for CFS. If this hadn't happened, it would look like the same as the UK.If only there were a pandemic that just targeted doctors. Then we could all say, "Well, most of us will be fine! The vulnerable physicians should take precautions, but we're gonna live our lives! Now get back to work!"
Fortunately, in the US, patient rights groups stood up for CFS patients to force the gov to accept the research showing a physical cause for CFS. If this hadn't happened, it would look like the same as the UK.
I'll never forget the PCP MD who once told me when I questioned him whether he would support my CFS disability before the SSA, "I don't believe that disability exists, everyone can work in some capacity." After harshly attacking his position I quit care immediately. That was on the first visit. Always ask your doc if they are supportive of CFS disability. If they answer no then get rid of them.Have never had a single physician suggest it as a meaningful diagnosis. The 'best' I got was a neurologist who said he believed that things like CFS or post-treatment lyme were real, but he had nothing to offer on how to treat them.
Fortunately, in the US, patient rights groups stood up for CFS patients to force the gov to accept the research showing a physical cause for CFS. If this hadn't happened, it would look like the same as the UK.