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

Rick Sanchez said:
BBCs turnaround regarding ME/CFS has definitely been ongoing for a while.

Some of you might remember this interview for BBCs Ouch Disability Talk.

http://www.bbc.co.uk/programmes/p05mgjjz

The interviewer Natasha Lipman suffers from ME/CFS and works as chronic illness blogger as a writer for bbcstories.

Tide is definitely turning, and at a much faster rate than expected :)!
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BBC radio has often been better, especially local radio, and occasionally regional TV. But I've been watching the BBC news website for a long time and they have studiously ignored everything about ME (try searching - nothing comes up) until now, which is why I was so amazed to see this story.

We can all speculate as to what's going in - the most generous speculation I can think of is that if they have never been allowed to report anything that didn't follow the SMC narrative until recently, being such champions of truth and justice they have chosen to report nothing at all until such time as they can report accurately.

I offer that piece of festive fiction to their defence team for free.
 
Alvin said:
I can grumble "People do get better from this illness"
While technically true the remission rate of people who have had it for 5 years or more i would guess probably something like 5%. Meaning a 95% chance of having this for life. 95% non remission rate would make a lot more impact.
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It's possibly something along those lines, though we don't have any longitudinal studies on ME/CFS recovery that span decades. This study which followed 33 adult ME/CFS patients for 5 years found that substantial improvement occurred in less than 6% of patients during that time period.


But for ME/CFS appearing after mononucleosis, the prognosis looks better, as one study found that when mono ME/CFS patients were first contacted for the study, 10% were in full or part time employment; and at the second contact an average of 7 year later, 55% were in full or part time employment.

However, I think the post-mononucleosis subset of ME/CFS is quite a small one. I would guess the bulk of ME/CFS cases are linked to enterovirus.
 
Hip said:
I would guess the bulk of ME/CFS cases are linked to enterovirus.
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Ah yes..we classic 'VP1' positives. Wasn't it Mowbray who said if you were positive for VP1 the chance of getting better was almost non existent? (I presume he meant spontaneously).
 
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Lilpink said:
Ah yes..we classic 'VP1' positives. Wasn't it Mowbray who said if you were positive for VP1 the chance of getting better was almost non existent? (I presume he meant spontaneously).
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I had not heard that before, but it sounds about right.

Unfortunately it is becoming harder to diagnose enterovirus-associated ME/CFS outside of the US.

The only blood tests that are sensitive enough to detect chronic enterovirus in ME/CFS patient are the antibody tests by neutralization (rather than by ELISA, IFA or CFT, which are all too insensitive). But to my knowledge, these antibody neutralization tests are only available in the US.
 
Alvin said:
Call me cynical but i doubt it, probably just luck an open minded reporter got this story.
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BBC got spanked hard after uncritically reporting on a climate-change denialist paper, based on an SMC blurb. I suspect they no longer trust the SMC, and may even have cut ties with them. The SMC did their usual trick of doubling down on the spin when their promotion of the paper was criticized, which would not have endeared them to the news sites which got in trouble for trusting them.
 
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Hip said:
I had not heard that before, but it sounds about right.

Unfortunately it is becoming harder to diagnose enterovirus-associated ME/CFS outside of the US.

The only blood tests that are sensitive enough to detect chronic enterovirus in ME/CFS patient are the antibody tests by neutralization (rather than by ELISA, IFA or CFT, which are all too insensitive). But to my knowledge, these antibody neutralization tests are only available in the US.
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Which is ironic given London was at the epicentre of making the link between this disease and enterovirus... at least as far as testing was concerned..back in the 80's before Wessely had the VP1 test removed as an option.
 
TiredSam said:
The phrase "treatment he needed" implies that an M.E. sufferer can go to a doctor and the doctor will say "It's M.E., you need this treatment" and offer something useful, which is very far from most M.E. sufferers' experience.

I'm happy now. You just have to look hard enough for something to grumble about. I woke up in a good mood this morning for some reason, sorry, normal service will be resumed as soon as possible.
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I have no inside knowledge, but based on his California residency and the statement "Michael is taking part in an academic study which aims to provide some answers. And he still has hope.", I concluded he is likely a patient at Stanford (or possibly OMI) and in a clinical study at Stanford.

Many insurers won't cover appointments, tests or treatment prescribed by Stanford or OMI. Like many, Michael might be paying for standard Stanford treatment (Valcyte, LDN, etc... possibly Rituximab) and blood tests out of pocket, which isn't cheap.
 
Lilpink said:
Which is ironic given London was at the epicentre of making the link between this disease and enterovirus
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Yes it is most ironic that here in the UK, the country which first made the link between enterovirus and ME/CFS, there is no means to test for chronic enterovirus infections.

Which means chronic coxsackievirus B has become an "invisible" infection in Britain.



Lilpink said:
back in the 80's before Wessely had the VP1 test removed as an option.
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I did not know that. How was he able to have the power to do that?

I don't know much about the VP1 antigen test developed by Prof Mowbray, and how effective this test was in detecting enterovirus. In all the early UK research on enterovirus and ME/CFS which dates as far back as the 1970s (I listed the UK research here), they used antibody testing, and these studies found that ME/CFS patients often have high titers to coxsackievirus B.

Then in the 1990s when PCR became available, the UK studies used to perform muscle biopsies on ME/CFS patients, and they found patients muscles were positive for enterovirus.

Though if you perform PCR on a blood sample, you usually get negative results, because in ME/CFS the enterovirus infection is found in the tissue, as a non-cytolytic infection which does not produce any viral particles (hence no viral particles in the blood, resulting in negative PCR by blood test).
 
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Solstice said:
That alone can't be it. In the past stuff like this would never get past the editors. So not only was there an open minded reporter, but there must've been a couple of open minded editors too. Which is much more of a change.
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I don't know, we can make our best guesses and time will tell if this is an anomaly or the trend continues (which of course i hope it does)

Hip said:
It's possibly something along those lines, though we don't have any longitudinal studies on ME/CFS recovery that span decades. This study which followed 33 adult ME/CFS patients for 5 years found that substantial improvement occurred in less than 6% of patients during that time period.


But for ME/CFS appearing after mononucleosis, the prognosis looks better, as one study found that when mono ME/CFS patients were first contacted for the study, 10% were in full or part time employment; and at the second contact an average of 7 year later, 55% were in full or part time employment.

However, I think the post-mononucleosis subset of ME/CFS is quite a small one. I would guess the bulk of ME/CFS cases are linked to enterovirus.
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My 5% was an educated guess, used to make my point, though 6% is pretty dismal. I do think there are subsets in ME/CFS, and until we have a disease mechanism and known cause (and if differentiation is true) we are in the wilderness.

Valentijn said:
BBC got spanked hard after uncritically reporting on a climate-change denialist paper, based on an SMC blurb. I suspect they no longer trust the SMC, and may even have cut ties with them. The SMC did their usual trick of doubling down on the spin when their promotion of the paper was criticized, which would not have endeared them to the news sites which got in trouble for trusting them.
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Interesting, lets hope two wrongs have made a right (and future honesty) :)
 
Alvin said:
I do think there are subsets in ME/CFS, and until we have a disease mechanism and known cause (and if differentiation is true) we are in the wilderness.
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The fact that ME/CFS from mononucleosis is more likely to go into remission suggests to my mind that EBV ME/CFS should be considered a different subset to enterovirus associated ME/CFS.
 
Hip said:
The fact that ME/CFS from mononucleosis is more likely to go into remission suggests to my mind that EBV ME/CFS should be considered a different subset to enterovirus associated ME/CFS.
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Indeed, i do hate that we area wastebasket diagnosis because people can be diagnosed as ME/CFS who don't have it since there is no test. Sometimes it can come from just not seeing the proper doctors to do the right tests. Also its possible the disease mechanism for ME/CFS has several causes/triggers and some may be more treatable then others, the Rituximab trial seems to suggest this may be the case.
 
Hip said:
I did not know that. How was he able to have the power to do that?
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Mmmm I have most certainly read that his disfavour led to its end... if I come across a document that is clearer about that (I'll try to check the Kew files maybe??? not sure if it would be in those??) then I'll post it. In the meantime page 8 here covers the situation briefly (and page 7 at '1987' is also interesting) : http://www.margaretwilliams.me/2011/grey-information-on-me-part-1april2011.pdf

"...at the Clinical Session of the 1989 AGM of the ME Association, Dr Byron Hyde from Canada referred to the VP1 test, confirming what Professor Mowbray himself had said: ME patients with a positive VP1 test become chronic, whilst those with a negative VP1 test recover. Despite this, the VP1 test was dismissed by psychiatrist Simon Wessely as “unsuitable for routine clinical use” [Lancet 1989:1:1028-9] and it is no longer available in the UK" (FWIW).
 
I just googled VP1 test, since I hadn't heard of it before. This is the paper that came up. It suggests to me that the test was not very useful.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293640/
Monospot and VP1 tests in chronic fatigue syndrome and major depression.
S P Lynch, R V Seth, and J Main
Author information ► Copyright and License information ►

Abstract
Thirty-four patients with chronic fatigue syndrome (CFS) were compared with controls with DSM-III-R major depression on the Monospot and VP1 antigen tests. There was no significant difference in the numbers initially VP1 positive in the groups (11/34 and 7/34 positive in the chronic fatigue and major depression group respectively). Four CFS but no depressed patients were Monospot positive initially. No patient was both Monospot and VP1 positive. Patients positive on the tests were offered a repeat 6 months later. Eight of the 11 VP1 positive patients in the CFS group were retested and four remained positive, but none of the four depressed patients retested remained positive. No patient retested remained Monospot positive. The Monospot and VP1 tests appear to have little discriminating ability between these groups as screening tests and their predictive validity is unclear.

Edit to add: This discussion has veered off the thread topic. I suggest if anyone wants to discuss VP1 further we ask for the posts on this to be moved to a new thread.
 
Trish said:
I just googled VP1 test, since I hadn't heard of it before. This is the paper that came up. It suggests to me that the test was not very useful.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1293640/
Monospot and VP1 tests in chronic fatigue syndrome and major depression.
S P Lynch, R V Seth, and J Main
Author information ► Copyright and License information ►

Abstract
Thirty-four patients with chronic fatigue syndrome (CFS) were compared with controls with DSM-III-R major depression on the Monospot and VP1 antigen tests. There was no significant difference in the numbers initially VP1 positive in the groups (11/34 and 7/34 positive in the chronic fatigue and major depression group respectively). Four CFS but no depressed patients were Monospot positive initially. No patient was both Monospot and VP1 positive. Patients positive on the tests were offered a repeat 6 months later. Eight of the 11 VP1 positive patients in the CFS group were retested and four remained positive, but none of the four depressed patients retested remained positive. No patient retested remained Monospot positive. The Monospot and VP1 tests appear to have little discriminating ability between these groups as screening tests and their predictive validity is unclear.

Edit to add: This discussion has veered off the thread topic. I suggest if anyone wants to discuss VP1 further we ask for the posts on this to be moved to a new thread.
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I do agree... its usefulness isn't entirely clear though reading that paper I'm not entirely clear if the samples were taken from blood or tissue. But having said that the old Mowbray tests used blood anyway. I think technology has moved on..one day it might be curious to revisit the test and look at it in the light of new discoveries. But this thread has indeed moved on to pastures new also so I'll leave it there. :)
 
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