Ramsays Disease
567 members466 posts

Dr LeFanu in the Telegraph asking for specific info re. PEM

Hi All,

Just halfway through reading Dr LeFanu's online surgery telegraph.co.uk/wellbeing/h...

He's had a lot of response to his anti PACE article and he is asking for links to published research re. PEM - someone on the ball could give him a lot of the info he needs (I'm thinking you Ian!)

He slates the psychiatric lobby and the impact they've had on our community, he has a regular column that is widely read and a great reputation, basically a good man to have on side.

Let's give him facts!

19 Replies
oldestnewest
1 like
Reply

I think so, they look great. I'm struggling to register with the Telegraph for some reason (do you think they know I'm a leftie?)

I think if any of us are able to log in to the Telegraph and provide Dr LeFanu with links to recent published medical research on PEM and the observed effect on muscles and gene expression, etc. that would be a brilliant thing; he has a high profile and loud voice!

1 like
Reply

I'm having problems logging in too, and I'm not a leftie (not a rightie either!).

I think it must be their issue, I'll keep trying.

Reply

Institute Of Medicine places PEM among core symptoms that clinicians must find when making diagnosis iom.nationalacademies.org/~...

1 like
Reply

If America sneezes and we in the UK catch a cold then not long before NICE catches up with the IOM - I've got my fingers crossed.

2 likes
Reply

Mark Van Ness researchgate.net/profile/Ma...

specifically

researchgate.net/publicatio...

researchgate.net/publicatio...

Of greater scientific merit than SF36 (Chalder T) self reporting, CPET (cardio pulmonary exercise testing ) is accepted in legal disputes with health insurance companies as the results are not subjective.

Calling it PEA (post exertional amplification) as a general deterioration in symptoms beyond the "malaise" which is as poor a descriptor as fatigue when defining affects experienced by patients.

Using the term languid as a description of Multiple Sclerosis patients finds little favour amongst the patient group though remaining popular with the academics, so changing the term malaise is probably not a high priority in light of that experience.

2 likes
Reply

Email him, Ian, if you can log in to the Telegraph - you know what you're talking about and can express yourself so well.

1 like
Reply

Telegraph contact page telegraph.co.uk/topics/abou...

share this post with Dr LeFanu if this is acceptable for members.

1 like
Reply

That's fine by me if it's ok with everyone else - can someone else (not me!)contact him though please?

I've got an appointment at the Cornwall ME service tomorrow that I haven't prepared for and I'm getting myself in a right knot!

1 like
Reply

More than acceptable sharing.

1 like
Reply

Will mail a link Monday for the attention of Dr LeFanu if we are all agreed.

1 like
Reply

Thank you Ian123, I'd be grateful.

1 like
Reply

Thank you for locating the good Dr's request for research.

Reply

Please add my link.

1 like
Reply

UKMSMi4 has PMed to say yes to sharing the thread and has added this:

Hi

Just to say I found another link which was actually the one I was looking for in the first place

cortjohnson.org/blog/20...

Hope it helps.

1 like
Reply

Have e mailed the links, appreciate all contributions.

1 like
Reply

Well done Ian and thanks to all X

1 like
Reply

Relation between gene expression and symptoms during PEM

tandfonline.com/doi/abs/10....

2 likes
Reply

Telegraph publish correction for October 28th story and will talk about the controversy meassociation.org.uk/2015/1... a cloud with a silver lining fingers crossed behind my back.

1 like
Reply

You may also like...