Trial By Error: And Another Prebuttal…

Would the BPS crowd not question flawed research in another field? Or, by their definition, this would be harassment?

As for people who have recovered, what definition did their "ME" meet? I know of someone who recovered without exercise or counseling. Apparently, they were diagnosed with "cfs".
 
Jonathan Edwards said:
A good point. Maybe either David or another investigative reporter needs to investigate this other investigative reporter. They could ask them questions about who pays them and whether they are running a campaign or have a doctorate that makes them in a position to write about what they write about.
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So long as they're all properly qualified we could have a circle of them all investigating/harassing one another's investigations/harassments.
 
Esther12 said:
So long as they're all properly qualified we could have a circle of them all investigating/harassing one another's investigations/harassments.
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Let's hope @dave30th 's previous comment elsewhere on 'circles' in relation to the BPS crew's culture of reviewing, citing and promoting each other's work is sufficient to discourage the setting up of any new circles. (Said with typical British prudery circling round the actual phrase used.)
 
dave30th said:
well, I have just had a talk with the video folks at the news organization, and was told that publication was not imminent but likely to be a bit in the future. So there's more waiting.
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Maybe they are waiting to release it at the same time that there is any news about the Bristol investigations. That way they could then say that yes there were some concerns raised but they were highlighted by this "Dr journalist" that has been harassing researchers etc, therefore we don't really need to take it as seriously. And it might deflect any results from the investigations.
 
AR68 said:
Historically I don't think that enough has been made of the 'dustbin diagnosis' element of this group of patients by the patients themselves or the organisations representing them. This has arguably led to infighting and confusion and has been caused, to a large extent, by the medical profession. This bunching together - and its consequences - must be made more prominent by campaigners as it is not their fault but has made everything much worse for them.
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I agree. I saw someone who commented that they were on the get set trial led by Peter white following pace. I think that they had possibly been given a CFS diagnosis by professor findlay. They said they could do exercise and didn’t feel at risk but they had a sister with an MEdiagnosis which they themselves saw as different, more severe /complex and said that of course she would never be able to engage in an exercise trial. So this lumping has been disastrous because it’s allowed the bps drs to claim and quote success whilst the treatment actually does nothing for pwME, who it should actually be often contraindicated for, who get forgotten

I agree with you on patient organisations being too reticent on this, whether because it actually benefits them in terms of acccess to numbers or because the accepted narrative has been there’s this umbrella now which we can’t untangle without proof of underlying difference. Ellen goudsmit used to say, and I agree, that there should have to be proof in fairness/justification of the lumping broad CFS umbrella rather than having to be proof ME is different.
 
Cinders66 said:
I agree with you on patient organisations being too reticent on this, whether because it actually benefits them in terms of acccess to numbers or because the accepted narrative has been there’s this umbrella now which we can’t untangle without proof of underlying difference. Ellen goudsmit used to say, and I agree, that there should have to be proof in fairness/justification of the lumping broad CFS umbrella rather than having to be proof ME is different.
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This is true, but it's also irrelevant when they can't objectively demonstrate efficacy for people with non-specific CF, let alone CFS or ME.
 
As others here have said on other threads, ME is really about abnormal fatigability & inability to produce energy.

I know this cannot be shown in a way that is well established and widely accepted but if they are only going on symptoms anyway why not accept peoples view of a compromised ability in this regard especially for those who had a past record pre-illness of quite different functioning?

Thus separating the goats from the sheep?
 
Is it entirely usual to agree to be photographed for a potential hatchet job, when one has no idea of the final form of the article? I would interpret a staged photograph to be an indication of the subject's approval of the content of the article. Is this not just a means of manipulating both the subject and the readers?
 
Lucibee said:
Great! Just in time for ME Awareness Month.
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They have a history of doing that. I remember there was an editorial piece in The BMJ timed for the start of May in maybe 2015?

One of my it's-not-true-but-it's-the-sort-of-thing-they-would-do conspiracies is that they organized mental health awareness week for the same month as ME when in eg the USA it's in October.
 
Stephen Straus was misogynistic and disdainful of patients. He was brought in as the CDC expert at Tahoe as his speciality was EBV and this was thought to such an epidemic and called Chronic Epstein Barr Syndrome. I have read that he was furious when the some patients came back as EBV negative.

The original definition of the disease was a list of EBV symptoms. It was not devised from a careful history of the people who were ill - how could and outbreak, which was why the CDC were brought in, have as a primary symptom 6 months of fatigue?

From other things I have read he said I can just imagine him saying "Well they might not all have EBV but they all have fatigue so we'll just rename it Chronic Fatigue Syndrome"

He comes across as very nasty in "Osler's Web".
 
Think this may be allowed under forum rules, given it there is a strong mapping onto this thread.

"It's called presidential harassment and it is unfortunate."

Schiff, a former prosecutor, responded with a cutting tweet: "I can understand why the idea of meaningful oversight terrifies the President."
 
i don’t understand the practicalities around press articles. If the journalist has finished it and it has been submitted to the editors is the timing of publication in the hands of the editors or does the journalist have any influence. Just wondering if it has been held back because they knew this HRA letter was coming and they wanted to allow that to land before going more full on.

Anyway the HRA letter has at least clarified SMCs continued interest and involvement after laying low for a while. It’s a pity their big fracking contract isn’t taking up all their time.
 
NelliePledge said:
Just wondering if it has been held back because they knew this HRA letter was coming and they wanted to allow that to land before going more full on.
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It's impossible to know. Big "long-form" narrative stories, as this appears to be, can take a very long time. It might be a last editor hadn't seen it, it might be the reporter felt they needed to do some subsequent reporting, it might be that Brexit or other news have pre-occupied everyone, it's possible they were waiting for the HRA report. There's no one way and every publication has its own editorial processes and so on. So speculation is fun but not really productive or informative. We just don't know, and are unlikely to.
 
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