2025: UK MEA Article and Video: ME/CFS: What you need to know about the disease

[Kitty]

I have never understood the use of «Dr» for people that are not medical doctors.

It's quite normal in the UK, though I suspect most people with a DPhil only ever use the title 'Dr' in formal or academic settings. This kind of publication is one of those, BUT they'd usually state the person's area of expertise as well. It rarely seems to cause much confusion.

«Katrina Pears, PhD» is a US format, which I'm not sure I've ever seen in Britain.

 

[Utsikt]

It's quite normal in the UK, though I suspect most people with a DPhil only ever use the title 'Dr' in formal or academic settings. This kind of publication is one of those, BUT they'd usually state the person's area of expertise as well. It rarely seems to cause much confusion.

«Katrina Pears, PhD» is a US format, which I'm not sure I've ever seen in Britain.

Ah, thank you for the context. You’d never use Dr in Norway unless you are a medical doctor.

 

[Hutan]

I think that's the thing, they don't exactly shout "actually she's a geochemist"

She does actually say that her PhD is in geochemistry on the video, I think she might even say that she is not a medical doctor. A lot of the speech is rather unclear though, I had to listen twice to pick up that she was saying 'geochemistry'.

Edit: transcript from the video
"I'm Dr Katrina Pears, the Research Correspondent for the ME Association.
So, just a little introduction about myself. I work for the MEA and cover research updates and reviews.
I'm not a medical doctor and I have a PhD in organic geochemistry with a background in research.
I have had ME/CFS myself for over 11 years."

I think that is pretty clear. A lot of people would use the title 'Dr' in this context, I think it is a reasonable thing to do.

It's just unfortunate that neither the years of having ME/CFS nor her science background have resulted in Katrina having an appropriate level of skepticism about medical research. And, it's like she didn't write the text herself, and someone just said to her 'here, read this'.

 

[Hutan]

We have deleted some posts discussing the issues of using the Doctor title and clarity around qualifications.

 

[hotblack]

I can't work out why she stumbles over and sometimes completely mangles so many of the words in the video

That I can understand. I’d probably need to record in sections, make loads of edits and have lots of fluffs if I was doing something like this. A lot of us have difficulty and make mistakes in writing or speech.

And there is some good information in there and clearly a good intent. But I agree in the problem with a lack of skepticism and overall way of presenting the research. It seems almost like stuff you get from LLMs when they try to helpfully cobble together different bits of information and tell a story that isn’t quite there.

My issue here is with the MEA really and the way this has been put out and is being targeted at patients and doctors. As an organisation they surely have a review or vetting process? We keep on seeing individuals or organisations campaigning with science, desperate to make a point but doing so in a way which I think could be counterproductive.

Thanks for the correction btw. I’d missed the bit where she explains her background but have re listened to the introduction now.

 

[Jonathan Edwards]

My issue here is with the MEA really and the way this has been put out and is being targeted at patients and doctors. As an organisation they surely have a review or vetting process?

If the MEA puts this out to Medical Education platforms it will be totally counterproductive. They give the impression of living in an alternative reality. Doctors for ME have made the same mistake.

And that alternative reality fails to include an understanding that the entire medical profession has turned its back on people with ME/CFS because it thinks such people live in this alternative reality - of stories about their illness that might seem to be science but aren't. Doctors frequently believe things that are not founded on evidence or on science but that is by the by. They will recognise this as an uncritical repetition of garbled evidence and take it as evidence they they were right all along.

 

[Sasha]

If the MEA puts this out to Medical Education platforms it will be totally counterproductive. They give the impression of living in an alternative reality. Doctors for ME have made the same mistake.

Can Dr Shepherd by called on to get this taken down, given the threat to all our credibility?

And that alternative reality fails to include an understanding that the entire medical profession has turned its back on people with ME/CFS because it thinks such people live in this alternative reality - of stories about their illness that might seem to be science but aren't. Doctors frequently believe things that are not founded on evidence or on science but that is by the by. They will recognise this as an uncritical repetition of garbled evidence and take it as evidence they they were right all along.

If the science comes along this year as you expect, to give a clearer picture of what's wrong with us, do you see this 'alternative reality' problem as being solved? Or do we need to think of ways to tackle it?

 

[Jonathan Edwards]

If the science comes along this year as you expect, to give a clearer picture of what's wrong with us, do you see this 'alternative reality' problem as being solved?

I am hoping so.

Can Dr Shepherd by called on to get this taken down, given the threat to all our credibility?

I could contact Charles but last time I did so he said he was not very well and I think he found my request fairly stressful (that Riley should resign).

We used to have members here who were also involved in MEA - even Charles used to post quite often. We seem to have drifted apart. I find it odd that nobody here does not have access to a sympathetic ear at MEA.

 

[Sasha]

I could contact Charles but last time I did so he said he was not very well and I think he found my request fairly stressful (that Riley should resign).

We used to have members here who were also involved in MEA - even Charles used to post quite often. We seem to have drifted apart. I find it odd that nobody here does not have access to a sympathetic ear at MEA.

I'm sorry to hear he was ill. Thanks for trying, on the Neil Riley issue.

I can't see any trace that Dr Shepherd has ever posted on S4ME, but he made 2,000+ posts on the old forum up until August 2018. Maybe he never made the move here. Maybe this is a big part of the problem - that people from our national charities don't engage with patients in a forum where patients have scientific expertise and, alongside allies like you, can challenge the charities' scientific narrative.

 

[Jonathan Edwards]

I can't see any trace that Dr Shepherd has ever posted on S4ME, but he made 2,000+ posts on the old forum up until August 2018.

Maybe that was it.