BBC Stories: "I had it all - now I create a new world in a single room"

I have a dim memory that the VP1 test was abandoned in part when the MEA collected results from their members and based on the low positive numbers declared that it wasn't effective. Someone like Dr Shepherd may remember. My blood results went to them.

It may have been politics and I guess Prof Mowbray may know a story or two. I was a patient of his. Did try to contact him via St Mary's about 10 years ago but no reply.

It's hard to describe just how bad the 90's were for UK patents with a total sea change in the NHS and an atmosphere of persecution on all levels - medical, media, benefits
 
The issue in those days, in the 1970s and 80s, was that the UK ME/CFS researchers were unsure what the high antibody titers to coxsackievirus B actually meant.

Was there a chronic enterovirus infection in ME/CFS patients, or are the high titers just due to dysfunction of the immune response, creating a high titer, but where there is no ongoing infection?

But then in the 1990s when PCR became available, the UK researchers were able to show that the muscles of ME/CFS patients contain enterovirus RNA, thus indicating a chronic infection of the muscles.

Though when researchers in the US tried to replicate the UK research, they did not look at the muscle tissues, but rather performed PCR testing on blood samples from ME/CFS patients, where they got a negative result.

This is why historically, the US discounted the enterovirus theory of ME/CFS, because of these negative PCR blood tests. The US then focused on herpesviruses in ME/CFS (which is a good thing, because herpesviruses are also linked to ME/CFS). Even today most ME/CFS doctors in the US still focus more on herpesviruses than enteroviruses, with the exception of Dr Chia.

But we now know why these PCR blood tests for enterovirus are negative in ME/CFS patients, even though patients have high antibody titers to enterovirus and have a positive PCR on muscle tissue tests: it is because the enterovirus infections in the tissues do not produce any new viral particles (or only a very small amount of viral particles). If very few new viral particles are being produced, then you will not find much virus floating around in the blood, and thus a blood PCR test will often be negative.


These enterovirus infections that ME/CFS patients have in their tissues are non-cytolytic infections, which do not produce new viral particles. That fact really solves the mystery of enteroviral testing in ME/CFS.

It was Professor Steven Tracy et al at the University of Nebraska who I believe discovered these enterovirus non-cytolytic infections.
 
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ukxmrv said:
It's hard to describe just how bad the 90's were for UK patents with a total sea change in the NHS and an atmosphere of persecution on all levels - medical, media, benefits
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It would be interesting to know more about that era, when the tide turned against good biomedical research, and all those implausible psych theories took over the show. Were people aware at that time that Simon Wessely was the driving force behind this sea change, or did that only become apparent later?
 
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Lilpink said:
I think people were aware of his malign influence.
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I know that the biomedical researchers were well aware of Wessely's bad influence on ME/CFS: apparently in the late 1980s, Simon Wessely wanted to place his ambitious mitts on the position of medical adviser to the UK ME Association; Dr Melvin Ramsay’s response as President of the ME Association was "over my dead body". Ref: 1


But I should clarify my question: I wonder if ME/CFS patients themselves were aware of Wessely's malign influence in the 1990s, or did that only come out later?
 
Hip said:
But I should clarify my question: I wonder if ME/CFS patients themselves were aware of Wessely's malign influence in the 1990s, or did that only come out later?
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I became ill in 1995 but wasn't diagnosed until I demanded it 4 years later, when the doctor very reluctantly said ME (I don't think he believed in it).

Even then it wasn't easy to get info, and most of that was along the lines of 'exercise', I think.

I don't think I knew much about Wessely at the time, although I was living near Camelford when I became ill. I don't think I was exposed to the water.
 
MeSci said:
I don't think I knew much about Wessely at the time
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I guess the Internet did not really take off as a source of mass information and reference until around 2000 say; I developed full ME/CFS in 2006 after a viral infection, and via the Internet quickly discovered that Wessely was the chief peddler of this "all in the mind" nonsense about ME/CFS, and the chief denier of biomedical theories of ME/CFS.

Whether I would have come across Wessely just by reading ME/CFS books that I may have found in bookshops I don't know.

The advent of the Internet certainly has been a huge boon for ME/CFS patients. I cannot imagine that we would have been able to fight back so successfully against these ridiculous "all in the mind" view of ME/CFS without the Internet.
 
Going back to the enterovirus VP1 protein test, a 1991 paper "Persistent virus infection of muscle in postviral fatigue syndrome" by Cunningham et al says:
The detection of the enterovirus structural protein VP1 in immune complexes from the serum of PVFS patients provides further evidence for the aetiological role of enteroviruses. This viral antigen was detected in 44 of 87 (51%) of patients compared with none of 36 controls: of those positive, 39 (89%) were still positive 4 months later. After acid dissociation of neutralising antibodies, infectious virus was isolated from the stools of 15 of 74 patients but none of 28 controls: the same serotype of virus was isolated from 5 of the 15 patients when retested one year later.
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It is interesting that this paper says that as well as enterovirus infections in the muscles, some ME/CFS patients were found to have Epstein-Barr virus muscle infections by PCR testing.
 
Hip said:
The advent of the Internet certainly has been a huge boon for ME/CFS patients. I cannot imagine that we would have been able to fight back so successfully against these ridiculous "all in the mind" view of ME/CFS without the Internet.
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And bearing in mind that prior to the common use of the internet patients were actively discouraged from contact with other ME patients ......
 
Hip said:
I know that the biomedical researchers were well aware of Wessely's bad influence on ME/CFS: apparently in the late 1980s, Simon Wessely wanted to place his ambitious mitts on the position of medical adviser to the UK ME Association; Dr Melvin Ramsay’s response as President of the ME Association was "over my dead body". Ref: 1

But I should clarify my question: I wonder if ME/CFS patients themselves were aware of Wessely's malign influence in the 1990s, or did that only come out later?
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Patients who attended the National Hospital in London and then reported back to their support groups knew.

From my memory of the time the Ean Proctor story was well know by patients. I'm guessing that it was featured in the MEA magazines at the time or local group newsletters. That was around 1988.

There was also the group "ME Action Campaign" which Wiki says was started in 1987. It was very vocal, anti-psych and named names. I remember at one stage it had 2-3000 members. They had a newsletter and this would have educated patients on who was doing what.

There is this TV prog from (one site said) 1993 which doesn't mention SW by name but features Ean Proctor (and many ME patients would have known by then the doctors involved)

 
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There was certainly an awareness of Wessely and Chalder, probably by about 1989. The other names that come to mind from the period were Thomas from London and Edwards from Liverpool. Then there were Pelosi and David who co authored a paper with Wessely. Some of them seemed to go quiet, but who knows what influence they have had?
 
Webdog said:
According to his Twitter feed, Michael Van Huffel has been doing IVIG infusions, as well as antibiotics.

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Hi. I sometimes read this page and saw this thread. It's pretty strange to see this pop up.

I laughed because this thread turned into intense science pretty far afield—not that I mind—but it happens so often in MECFS forums (so I'm replying after Webdog). Yes, IVIG. I did IV antibiotics and had a port—I had multiple positive bartonella cultures and multiple-lab positive for babesia as well. I treated the hell out of those things, but was still sick. My health insurance company canceled me (preexisting condition they came up with) 2 weeks after I had the port put in. That pretty much did it, financially—2 years out of pocket, no insurance and a port. I was, to put it mildly, uninsurable. That's personal to write, but people sort of brought it up and I have a lingering hate for private insurers, so I'll say it. I'm not saying it so you feel bad for me—most ME patients struggle with money a lot. The only unique thing for me about it is that it happened to me.

I really wanted to say that the way it was presented—without question, doubt or referring to supposed 'controversies'—is due to Mobeen. He read the Washington Post article about Ron Davis and the OMF study (yes, I'm in it), and he's a good guy and great journalist. I knew ME is framed horribly in the UK, but from a distance. But I got a lot of messages—and it was mentioned over and over, people glad for it—they were so glad that it's obvious that's been a very big source of pain and suffering for ME patients in England (a few in Ireland told me they extricated themselves from UK guidelines a while back).

Anyway—I think it was all Mobeen, and I don't think he encountered anything like resistance for how he defined it, the physiological realness of it. I want people to know it was him.

Also, hi!
 
Hi, @MVH, great that you've joined us. Welcome. I hope you'll stick around and join in as much as you want to. I was very moved by your story.

And I'm grateful that there are excellent journalists like Mobeen willing and able to tell your story correctly - and get the BBC to publish it.
 
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