Dr David Tuller: Professor Jonathan Edwards’ View of ME

Countrygirl

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http://www.virology.ws/2019/12/02/t...nJYeDHbxrQtpq8K08efvj3Tb7cVN7LEIGsrLDzd1VMMP8

Trial By Error: Professor Jonathan Edwards’ View of ME

2 DECEMBER 2019

By David Tuller, DrPH
Professor Jonathan Edwards posted this essay a while ago on the Science For ME forum. I only noticed it recently. Professor Edwards, a retired rheumatologist from University College London, has played a key role n the last few years as an advocate for patients as well as proper science. So I thought it would be helpful to share his thoughts on a topic we all wonder about: “What is ME?”

I am reposting this with Professor Edwards’ permission. The views expressed are obviously his.
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What is ME?: A Medical Outsider’s Viewpoint
Jonathan Edwards


This an account of my thoughts about the nature of ME and the issues surrounding it, put together in response to queries. I hope it may be of interest both to patients and carers and to people with a medical or research interest in the illness........................
 
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In general the fatigue of chronic diseases is predictable and shows up immediately on exertion. In ME symptoms appear as ‘payback’ unpredictably and, in the form of post-exertional malaise, with variable delay. Most notably, the level of symptoms and disability is out of proportion to any measurable inflammation or biochemical disturbance. It is also out of proportion to any mood change that might suggest a depressive illness.
BINGO!!!
 
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That brings to mind my Dad's sister, 16 years younger than he, who was diagnosed with MS in the early 1970s & that diagnosis has now been overturned by the genetics department at Mayo.

We need research on a broad front to identify leads to focus efforts on. Genetics has to be a worthwhile area to cover. There are indications that there is genetic susceptibility. Finding out what the genes are may only provide pointers rather than specific answers, but these would still be powerful.
Starting a couple years ago with 1 genetic clash, geneticists at Mayo have just recently ruled that Aunt Susan never had MS but instead has not 1 but 3 sets of known problematic clashes between various groupings of ethnic genes & she is now off a number of medications and has notably improved overall health.
 

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The part of the interview that really resonates with me and that I personally also believe could be what is happening in this illness is this (copied and pasted):

"For a problem to develop with cell signalling throughout the body in someone who has previously been well, there must be some new chemical signal reaching all the cells. The only likely source of that (other than neural signals from the brain) looks to be the immune system, with the signal being some form of autoantibody, or a cytokine produced by T cells."

"Separating out neural signalling from innate immune signalling may not be straightforward because they are linked through the hypothalamus. However, it seems reasonably plausible that following initial immune disturbance the continuing production of symptoms is due to some form of error in, or damage to, a control mechanism in the brain."

I read an interesting thread that Dr Edwards was involved in over on the other forum (S4ME) a while back and he mentioned his theory on faulty neural signalling then.

In my own case, this theory would make complete sense to me and, in a way, I have been trying to articulate a similar theory to this about what I feel is happening in my system (I do not have a science background unfortunately) to the doctors I have seen over the years.

Several respected doctors I have seen have mentioned possible dysfunction of the hypothalamus and in their own words "scrambled nerve signals" in the hypothalamus/central nervous system/brain as a probable cause of our symptoms.

It would be interesting to know what others think.

If this indeed turned out to be the cause, I wonder if it will be at all treatable in future.
 
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