Spending five minutes of spare time on the Dr Myhill website the other day, (I’d recommend it for shiggles at some of the stupid, if it wasn’t so serious,) when the huge section about Mitochondrial Function caught my eye.
Her ideas are based on a paper she co wrote, and she appears convinced that she has got to the central core of ME/CFS, from the rather powerful message her website conveys. (Note the terribly low impact Journal this paper is published in, ranked about 650th in its sector. That means that somebody doing research in the field, this journal would be the 650th one they would turn to for the most reliable and up to date information. Gosh) This seems to be one of the central ideas behind Myhills treatment of ME/CFS, and she advises patients on her website how to get the tests ordered, for £225.00, and how much she charges for a letter to the patients GP interpreting the test results, £80.00. You might think that a discovery like this would be one of the main subjects for discussion among ME/CFS activists around the web, but frankly, it isn’t.
On the Myhill echochamber facebook page just this week, Sally Phillippe was bemoaning the fact that mainstream medicine is so unfair to her heroine, and used something copied from the ME Association Facebook page as evidence. I didn’t really pay attention at first, but it niggled away at me until my hindbrain started sending messages to my conciousness. Mitochondria may have been involved in this process, I’m not sure. A low energy bulb struggled into life in my head and I went back, and commented on Sallys original question. That meant mischief was afoot, and it was. In typical echochamber fashion, a couple of hours later, the whole thing had been expunged from history in order to save their heroines dignity.
Why all the fuss, and what was deleted? It seems that Sally thinks it is disgusting that mainstream medicine doesn’t take Myhill Mitochondrial function tests, or her £80.00 letter very seriously. A number of patients had asked the Chief Medical Advisor and Trustee of the ME Association, Dr. Charles Shepherd, about the validity of the Myhill Mitochondrial Function tests, because their own GPs had dismissed the tests and Myhills £80.00 letter.
Shepherds reply was as good a put down as I have seen recently, bar one, as follows –
“This expensive private test has not been validated and I am not aware of any clinician who works with muscle diseases, especially mitochondrial disease, that uses this test. Hence it is not used in the NHS. I have been involved with various aspects of mitochondrial muscle research in relation to ME/CFS over the past thirty years, including the use of my own muscle, and I am equally sceptical about its validity. I do not therefore make use of it on a personal basis or with my ME/CFS patients.”
“Hopefully, the new mitochondrial research (Prof Anne McCardle et al) that we are co-funding with the MRC will lead to the development of a test for mitochondrial function that will be of value in both the diagnosis and management of ME/CFS.”
“This test has not been validated or replicated. The test is not used by clinicians and researchers who spend their time dealing with people who have mitochondrial muscle disease.”
I can see Dr. Shepherd penning the phrase “pill peddling uberquack” before constraints of politeness between Doctors led him to respond as above.
And now you know who I think penned the best put down in recent history.
(The original exchange that prompted
Sally’s question on the echochamber
facebook page, can be seen here.)