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E. Crawley: Time to end the damaging battle over chronic fatigue syndrome

Messages
13,774
In this case, might not a protest be playing into her hands? ie, given the title of her lecture, she could merely gesture to any protesters and say to the audience "see, I told you it was controversial". On the other hand she shouldn't be allowed to get away with preaching any old tripe unchallenged. Glad I'm not in Bristol wrestling with the dilemma of whether to turn up with a coffee cup and a chair.

As with all ME/CFS stuff, it would be important to be cautious and rigorous to avoid playing in to any prejudices. 'Protest' might be the wrong word, but correcting misrepresentations is always a good thing!

I rather doubt she's going to explain the role the poor quality of her work has played in creating the 'controversy' which surrounds her.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Glad I'm not in Bristol wrestling with the dilemma of whether to turn up with a coffee cup and a chair
Ah well that's the dilemma I'm now presented with! Realistically I'm probably too ill for an evening event, especially a stressful one.

The actual challenge is to go along and ask difficult questions in an entirely civil and academically conventional manner. To make patients look more reasonable than her. We need a few people who are entirely at home in that academic habitas to go and disrupt the assumption of heroic researcher vs unstable, ungrateful patients.
 

Jenny TipsforME

Senior Member
Messages
1,184
Location
Bristol
Might be a good starting place for protest.
The more I think of it the more I suspect there's a bit of an expectation of angry protest to confirm her narrative.

I do think there's a place to stand on tables and shout, but this event probably requires a different strategy. A well evidenced question highlighting the difference between fatigue and ME may be a good starting point. Something about her definition not being comparable with other researchers?
 
The more I think of it the more I suspect there's a bit of an expectation of angry protest to confirm her narrative.

I do think there's a place to stand on tables and shout, but this event probably requires a different strategy. A well evidenced question highlighting the difference between fatigue and ME may be a good starting point. Something about her definition not being comparable with other researchers?
Can we not look through her publications and list the definitions that she has used for each one? Then compare the differences between what she uses, what NICE is (if any) and then what other definitions are used worldwide (ICC/CCC etc).
 

Molly98

Senior Member
Messages
576
Can we not look through her publications and list the definitions that she has used for each one? Then compare the differences between what she uses, what NICE is (if any) and then what other definitions are used worldwide (ICC/CCC etc).
It might also be worth having quotes to hand out of what other leading scientists in the field of ME think about her research and practice, in the international field of ME I think she is considered a joke by many and not at all credible and this would be good to draw attention to in an academic setting.
 
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13,774
Messages
2,125
16195924_780175448797512_1084805837685520317_n.jpg


I thinks she's pinched my halo
 

ash0787

Senior Member
Messages
308
presumably this charity is no good since they are associating with her, where are their offices based ?
it doesn't seem to say anywhere on their website, I heard there is some me/cfs charity or organization based in MK which is not far from me.
 
presumably this charity is no good since they are associating with her, where are their offices based ?
it doesn't seem to say anywhere on their website, I heard there is some me/cfs charity or organization based in MK which is not far from me.
Association for Young People with ME (AYME) address is AYME, Tickford House, Silver Street, Newport Pagnell, MK16 0EX. I think it's more than fair to say that they don't have the best reputation with the majority of PR users for many reasons, including their support of Crawley.

Funnily enough the ME Associations address is ME Association
7 Apollo Office Court
Radclive Road
Gawcott
Bucks
MK18 4DF

Not sure if there are any historic links or it's just coincidence.
 

ash0787

Senior Member
Messages
308
my brother used to live there, I can't find the exact building as most look residential but I think its on this road

aKWvP8p.jpg


I live 2 miles from gawcott. Is the ME association favored or not ?
 
The ME Associations Facebook page has finally picked up on this and posted, can't link to the post itself but their page is https://www.facebook.com/ME-Association-171411469583186/. If anybody else wants to reply to the Crawley supporter who has just posted this
Harmful extremism

Having worked in this field nationally and locally for nearly 30 years I have been aware of some extraordinary behaviour by some nationally towards professionals that are trying to help those affected by ME/CFS. Personal attacks have often been waged on doctors, therapists, scientists and others.

To read some internet threads one could be forgiven for thinking that people do not want to know about anyone getting better to any degree by any means - some seem to be at their most ferocious when there is the slightest suggestion of anyone getting better at all.

Recently we are again witnessing orchestrated national campaigns trying to scupper important research projects that are to look at the pathology of the illness(s) with a view to eventually developing treatments. We also see other campaigns trying to prevent studies into how different strategies could lead to significant improvements in many peoples condition.

Much of this seems to result from some believing that those involved in treatment and research are implying that their illness is psychological in nature which is a misconception. Although psychological elements are sometimes involved in the illness it is not being perceived as psychological per se. We should all be able to move on from this and understand that it may take many years for curative treatments to become available and in the meantime we need to improve people’s quality of life as much as possible.

There are also some very committed NHS teams that continue to work hard with those with ME/CFS across the UK. BACME member services deal with 11,000 new referrals per year and have seen over 120,000 people so-far in England alone since being established during 2005 and these multidisciplinary teams continue to help many grateful mildly and moderately affected patients towards improved health.

It should be remembered that the active professionals and others, even though coming at things from different angles sometimes, are all trying to help those with ME/CFS. Although very small in number, the “activists” who often operate on the national internet put good people off helping us. we have seen many leave this field due to the climate of anger that sometimes prevails. It is of no surprise that so few clinicians and scientists are coming forward to manage and research the illness(s).
feel free to drop by and comment.
 
Is the ME association favored or not ?
Well, I'll give you a personal answer to that. I'm a patient member of the ME Association, and I think that they do a lot of good work, particularly in terms of providing support and educational materials. I don't agree with their current position on MEGA and I also think they could do a number of things in a better way but, it has to be said, they are limited in their resources. Just thinking off the top of my head, I might argue then that they try to do too much, in relation to the resources they have, but it's better they do that rather than too little.
 
Messages
10,157
It seems the person who commented "Harmful Extremism... .... " is one Colin Barton of the Sussex & Kent ME/CFS Society. Doesn't Sussex and Kent ME/CFS Society have a long history of supporting the psychosocial agenda and therefore obviously Creepy Crawley. He's an eejit. Somebody did address him.

"Personal attacks have often been waged on doctors, therapists, scientists and others.". An often heard claim that is never supported with any proof. The same argument was used to refuse access to some of the PACE trial data, the statement from the Tribunal who ruled that the data should be released said "It was clear that [Anderson's] assessment of activist behaviour was, in our view, grossly exaggerated and the only actual evidence was that an individual at a seminar had heckled Professor Chalder." Of Chalder's testimony, the Information Commissioner reported that "she accepts that unpleasant things have been said to and about PACE researchers only, but that no threats have been made either to researchers or participants. The highest she could put it was that some participants stated that they had been made to feel "uncomfortable" as a result of their contact with and treatment from her, not because of their participation in the trial per se.". Hardly a campaign of hate and vitriol that you seem to be claiming here. The only harm that is being done here is when treatments for patients with fatigue are forced on people with ME who are unable to cope with the demands made of them. Any anger comes from the medical system not listening to the patients who are being harmed by inappropriate treatments.
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Jonathan Edwards

"Gibberish"
Messages
5,256
I don't log in to Facebook but if anybody feels inclined they could post a message:

The author of the comment 'Harmful Extremism' would do well to wake up to the fact that patients with ME are criticising certain research projects on the internet because the projects are either demonstrably very poor quality or apparently very poorly thought through (projected work). In other words they are bad science. I very much support these criticisms and admire the intelligence and tenacity of those making them. No good scientists are going to be put off by this. It might be a good thing if those doing poor science took note and reconsidered their approach.

Describing this critical activity as extremism is unwarranted and in my view divisive and insulting.

Professor Jonathan Edwards
Department of Medicine
University College London
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
The ME Associations Facebook page has finally picked up on this and posted, can't link to the post itself but their page is https://www.facebook.com/ME-Association-171411469583186/. If anybody else wants to reply to the Crawley supporter who has just posted this

feel free to drop by and comment.
Sounds like somebody's rattled, which is good. Rattled enough to indulge in the same tired old labelling and name-calling which seems to be their only response. Hopefully a sign that his world is falling apart.

EDIT: Just occurred to me that over 3000 of this small group of activists signed a petition against MEGA, which is more than the number of people who signed the petition supporting it. Doesn't that make them the minority?

How many people signed the Lancet petition? How many scientists and researchers signed the Letter to the Lancet?

Perhaps he and his small minority of psycho-babblers would mind buggering off now?
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Quoting 'harmful extremism' post #256

"To read some internet threads one could be forgiven for thinking that people do not want to know about anyone getting better to any degree by any means - some seem to be at their most ferocious when there is the slightest suggestion of anyone getting better at all."

This is a central issue for those of us who speak out about Crawley's work. She talks about working toward finding treatments for people with ME then goes on to study people with fatigue and applies those findings onto people who will suffer harm because they are not the same group as was studied.

Some people with fatigue may well respond to her treatments. The disingenuous conflation needs to be outed. Crawley's research criteria do not describe ME.

And what about holding her to account for her blaming patients when they do not get well.