Thank you for fleshing out some of the history of the abuse ME patients have dealt with. We need a nonstop spotlight to bring this abuse out of the shadows.
A terribly sorry story, one which just keeps repeating itself ad infinitum.
There is an awful lot to unpack there, old timers will recognise a lot of it sadly, but one sentence, right at the top, jumped out at me: "Not enough was known about ME, Fauci explained, to merit investment in it. "
It reminds me of the time, not so long ago (2019) when, after suffering almost a decade of neuropathic pain all over my skin, which had turned up like a demonic poltergeist that wouldn't leave the house, 41 years after first contracting ME, I decided it was time to properly discover whether or not this was a Small Fibre Neuropathy. Being unable to discover how to access a punch biopsy from my private neurologist (!!), nor my GP, nor with any sense of alacrity from the Pain Consultant ("why did I want to bother?" / "Mindfulness works" I kid you not), I eventually decided on a private referral to our 'Local SFPN Expert' in Cardiff, South Wales.
There is more that could be said about this particular person which I won't go into, but let's just say he had his prejudices, unknown to me before the appointment those prejudices lay within the area of the BioPsychoSocial lunacy model. Despite making the appointment having, in advance and via email, ensured he knew I was there with the sole aim of accessing a punch biopsy, he agreed to an expensive consultation. Except he had zero direct ability to access a punch biopsy for me at all.. as we later came to realise.
Partly, I'm guessing, spurred by prejudice and what he knew to be an inability to access the promised test he feigned many excuses as to why I might not really want to go ahead with it at all. (Paraphrased as accurately as possible): "It's very painful". No it isn't! "What would you get from it?" My response was (paraphrased) "..either more treatment options or more testing". "No" was his answer "... you wouldn't get any more treatment than you're presently taking and you wouldn't have more tests". Except that's wrong. Anne Oaklander clearly delineates the tests that need to be done after a positive punch biopsy for SFPN. And dependent on the answers to those tests you might have access to more treatment options. That was an outright lie. But the bit that your Fauci remark particularly reminds me of for its equivalent lunacy and downright intellectually moribund nature was this: "People like you (by which he clearly meant people with ME) aren't positive, so we don't test you"! The 'Small Fibre Poly Neuropathy Expert'? What a joke!
Eventually, working backwards by ringing the KCL histology lab where I knew most punch biopsies were interpreted, I found another private clinic in order to access said punch biopsy. And it was positive. Quelle surprise! So 'people like me' are positive and should be tested.
Thank you for fleshing out some of the history of the abuse ME patients have dealt with. We need a nonstop spotlight to bring this abuse out of the shadows.
A terribly sorry story, one which just keeps repeating itself ad infinitum.
There is an awful lot to unpack there, old timers will recognise a lot of it sadly, but one sentence, right at the top, jumped out at me: "Not enough was known about ME, Fauci explained, to merit investment in it. "
It reminds me of the time, not so long ago (2019) when, after suffering almost a decade of neuropathic pain all over my skin, which had turned up like a demonic poltergeist that wouldn't leave the house, 41 years after first contracting ME, I decided it was time to properly discover whether or not this was a Small Fibre Neuropathy. Being unable to discover how to access a punch biopsy from my private neurologist (!!), nor my GP, nor with any sense of alacrity from the Pain Consultant ("why did I want to bother?" / "Mindfulness works" I kid you not), I eventually decided on a private referral to our 'Local SFPN Expert' in Cardiff, South Wales.
There is more that could be said about this particular person which I won't go into, but let's just say he had his prejudices, unknown to me before the appointment those prejudices lay within the area of the BioPsychoSocial lunacy model. Despite making the appointment having, in advance and via email, ensured he knew I was there with the sole aim of accessing a punch biopsy, he agreed to an expensive consultation. Except he had zero direct ability to access a punch biopsy for me at all.. as we later came to realise.
Partly, I'm guessing, spurred by prejudice and what he knew to be an inability to access the promised test he feigned many excuses as to why I might not really want to go ahead with it at all. (Paraphrased as accurately as possible): "It's very painful". No it isn't! "What would you get from it?" My response was (paraphrased) "..either more treatment options or more testing". "No" was his answer "... you wouldn't get any more treatment than you're presently taking and you wouldn't have more tests". Except that's wrong. Anne Oaklander clearly delineates the tests that need to be done after a positive punch biopsy for SFPN. And dependent on the answers to those tests you might have access to more treatment options. That was an outright lie. But the bit that your Fauci remark particularly reminds me of for its equivalent lunacy and downright intellectually moribund nature was this: "People like you (by which he clearly meant people with ME) aren't positive, so we don't test you"! The 'Small Fibre Poly Neuropathy Expert'? What a joke!
Eventually, working backwards by ringing the KCL histology lab where I knew most punch biopsies were interpreted, I found another private clinic in order to access said punch biopsy. And it was positive. Quelle surprise! So 'people like me' are positive and should be tested.
Thank you for being a voice for all of those inflicted with this insidious disease. The incompetence of the NIH and CDC is simply mind blowing.
Thank you for your work. Damn the NIH & Anthony F*%@ing Fauci to hell.