Patients with Chronic Fatigue Syndrome needed for new study - Keele University UK

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Posted on 17 May 2018

Researchers at Keele University are looking for people with Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME) to discuss a study which aims to give a better understanding of the support needs of people suffering with the condition.

A meeting will be taking place at Keele University on Thursday 21st June 2018, 10am – midday. If you would like to take part, or need further information, then please get in touch with Laura Campbell l.campbell@keele.ac.uk / 01782 734727.

https://www.keele.ac.uk/pchs/newsan...thchronicfatiguesyndromeneededfornewstudy.php

The lead researcher, Professor Carolyn Chew-Graham is a GP and a Professor of General Practice Research, Director of Clinical Academic Training.

 

Professor Carolyn Chew-Graham is co-author of "Guidance for commissioners of services for people with medically unexplained symptoms" from 2017, https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf



and is listed as one of the investigators in the FINE trial, http://me-pedia.org/wiki/FINE_trial

 

wow - 10am to 12 noon.

 

Maybe we should raise our concerns? They want to hear from patients, so perhaps they should hear what we really want (and don't want).

 

I probably could get there, as it happens. But I dunno. Is it better to go and be heard? Or will they just twist what I say to their own ends, as usual? And how would they deal with questions such as, 'I think labels like MUS and FND actually obstruct patients from getting proper treatment and care. If patients with ME don't even respond to the same treatments, it's even more ridiculous to lump them in with patients from other diseases to give them all a one-size-fits-all treatment plan.'

 

It depends on how much strength / time you have and how you feel after. Usually I feel better about speaking out. We can sometimes meet good contacts at these things and make a difference in ways we didn't realise first.

 

My worry is how likely your words are to be twisted. That said if we never speak up, we'll never be heard.

It depends how they gather /record views. If you see a questionnaire prepare for everything you say to be twisted like a pretzel, in my experience at any rate.

Is it worth contacting them for more information? Is there a meeting agenda you could see in advance, is it a general discussion, will there be questionnaires, is there a quiet area to sit and recover if need be, transport links and car parks...that kinda thing.

 

Well, there's a very easy way to get the views of 800 people with ME and that is to sign up to S4ME. I cannot see why they should not do that in preference to a two hour meeting that will get bogged down with wittering. They could have a dedicated thread open for months.

 

How could any reasonable clinician or researcher think this method could possibly elicit information about the needs of those most in need? We know who will not be attending. One wonders what the screening process will be like to eliminate people with chronic fatigue.

 

I have emailed Laura Campbell to suggest she logs on.

 

Plus what @Jonathan Edwards said.

Maybe a few of us should respond to the email address given, explaining we are interested, but it would be impossible for us to cope with travel and attending a meeting of any length. We are concerned that anyone who is capable of such an outing will either be mildly affected (and therefore not necessarily understand the needs of the severely affected) or may be misdiagnosed.

Crossed posts with @Jonathan Edwards - Thank you JE

 

Chew-Graham was one of the FINE researchers, and pretty much everything I've seen from her on CFS has been terrible.

Here's Tuller's blog on FINE: http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/

 

The fact that she calls the disease CFS/ME in this order, which is typically in use with researchers who promote the bps model, is enough for me to raise serious concerns

 

If you're going to organise a discussion with people with a disability then surely you should make it accessible. In this case the ideal adjustment would be to visit people in their own homes but if this isn't possible why not use technology and make it conference calls so people can participate from their own homes or invite written submissions so people can pace whilst giving their response?

If they fail to make adjustments for accessibility it kind of renders the whole exercise completely pointless I would have thought.

The irony is that they want to talk to people about the barriers to care that they experience and yet they're putting up all of these barriers around the conversation itself!

I will try to email some of these thoughts if I have time/energy. I would think that this is the best way to go. If I was to push myself to actually attend I'd be showing them that it's possible for me to get places and they'd never see the weeks in bed afterwards.

 

Also, the point I think ukxmrv was making that having the meeting 10am to 12pm ignores the difficulties that many of us have with mornings.

 

This is what I was thinking. However, it's hard to say what impact the journey and long meeting afterwards would have. I'd have to rest up beforehand, drink lots of electrolytes, take lots of D-ribose, and hope for the best.

I'll think on it. Most likely I won't do it, but if I feel up to it, I might go (mainly just to bear witness).

 

While it would be great to have an observer there, don't push yourself too hard @adambeyoncelowe.

Sometimes, I think they do these things deliberately. Sometimes to demonstrate - "look you can do it if you only try" and at others just to make sure they weed out the very patients they are supposedly trying to engage with.

I wonder with future shenanigans of this sort if we contact them via email and explain that the meeting is inaccessible to us because of our condition. Then if they ignore us we could take it further as a disability rights issue?

 

Laura Campbell said she would pass my message to somebody else.