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]

Responds to deleted post

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.

 

[Kitty]

I think Russell visits occasionally, though I'm not sure he posts very often.

 

[Braganca]

The video seems to have been taken down so perhaps the criticism has been heard.

 

[hotblack]

Probably for the best.

I’m pleased they’re trying to get a message out. But hopefully for any future videos the organisation can consider if the message is intended for patients, medics or campaigning and tailor it accordingly. I was thinking about this a bit more this morning and wonder if that confusion didn’t help it serve any of the audiences as well as it could.

 

[Trish]

The booklet is still available. I hope the criticisms here will be taken seriously.
Ideally Dr Katrina Pears will join the forum and discuss the issues with us with a view to amending the booklet.

Katrina, if you are reading this, we are all on the same side here. We all want the best possible information to be made available to clinicians, researchers and pwME. The MEA has a vital role in this process, and we'd love you to be able to help with that in the best possible way.

 

[hotblack]

I wholeheartedly agree @Trish

 

[Wyva]

Katrina Pears is actually a member here. I remember she posted a few things a while ago. However, I'm unable to tag her for some reason. I'm not sure if it is due to some technical difficulties or not. Anyway, here is her member profile in case someone else would like to tag her or maybe even send her a direct message: https://www.s4me.info/members/katrinapears.9772/

 

[rvallee]

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

It's still worth pointing out that this is not a valid excuse for anything that has happened, and is deeply disturbing, and appalling, behavior that is completely at odds with not just the most basic professionalism, but many laws, regulations and health care principles.

Still, this is the system we have to work with, and although the current model that medicine espouses is built out of alternative reality and delusional fantasies, we can't make the same mistakes because this is a privilege only afforded to those with the balance of power, which here is all of it. We can make zero mistakes, and still lose. They can make nothing but mistakes, and still win. This is just the nature of institutional abuses of power.

But it's really important to emphasize that the medical profession is absolutely 100% wrong here, in a totally black and white manner.

 

[Utsikt]

It's still worth pointing out that this is not a valid excuse for anything that has happened, and is deeply disturbing, and appalling, behavior that is completely at odds with not just the most basic professionalism, but many laws, regulations and health care principles.

Still, this is the system we have to work with, and although the current model that medicine espouses is built out of alternative reality and delusional fantasies, we can't make the same mistakes because this is a privilege only afforded to those with the balance of power, which here is all of it. We can make zero mistakes, and still lose. They can make nothing but mistakes, and still win. This is just the nature of institutional abuses of power.

But it's really important to emphasize that the medical profession is absolutely 100% wrong here, in a totally black and white manner.

This.

Both a large group of patients and medical professionals are wrong. But the people that have by far the largest responsibility are those that should know better, i.e. the medical professionals.

 

[Hutan]

We have deleted some posting focussed on issues with the delivery of the content in the video (e.g. differences between the transcript and audio).

 

[Hutan]

The video seems to have been taken down so perhaps the criticism has been heard.

The video is now a private video - you have to sign in to get access. I wonder if it is still accessible by medical professionals on that Vumedi platform?

@Russell Fleming, @katrinapears, or someone else from the MEA - can you please tell us if medical professionals are still able to view the video and what the plans are for the booklet and the other content that has been mentioned?