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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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****** !!!!!!!! ****************!!!!!!!!!!!!!!!! Junior version of PACE funded PI Dr Crawley

K22

K22

Messages
92
https://ukctg.nihr.ac.uk/trials/trial-details/trial-details?trialNumber=ISRCTN23962803

I see here the NICE guidelines criteria are to be used for CFS & ME n the magenta trial. In fact they might as well be called the Esther Crawley criteria. I think those of us who've long urged for a refinement of and rallying around in the UK better & world recognised criteria eg FUKUDA for CFS & CCC for ME, are getting increasingly dismayed at how the UK NICE criteria is being used to let this type of weak fatigue research masquerade as CFS & ME and mop up CFS funds. CCC might not have been perfect but it would have been much better for UK charities to unite behind them & advocate for them than to allow this CFS distortion in the Oxford vein to flourish. Or we could have rallied around SEID.
In the write up for the Magenta trial CFS is defined as causing disabling fatigue. That's it folks, you're tired. How the hec is that better for patients than SEID which at least getting systemic disease with exertion issues to the fore. What's the point in saying it's better to keep ME in the UK when as far as the establishment is concerned & acting, ME is just an old label for chronic fatigue?
 
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Keela Too

Keela Too

Sally Burch
Messages
900
Location
N.Ireland
I don't know the right answers. It is true though that here in UK anything that mentions fatigue is immediately given the appendage "also called ME" which is ludicrous!

Hopefully James Coyne will help unravel some of the crazy antics going on here.
 
J

jadam914

Foggy member
Messages
56
Location
Palmyra, Pa, USA
I think it best to send them official notice (that they can't say they didn't get)of the damaging effects GET. If they still do it, bad medicine hurting children would not play well in the media. Especially if they were told.
 
beaker

beaker

ME/cfs 1986
Messages
773
Location
USA
jadam914 said:
I think it best to send them official notice (that they can't say they didn't get)of the damaging effects GET. If they still do it, bad medicine hurting children would not play well in the media. Especially if they were told.
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Letters to Editors of Newspapers ? -- big and small ? Not sure how it works in UK. Here our tiny local paper publishes whatever is sent in. ( edited for language and such of course w. ed. duly noted)
 
W

worldbackwards

Senior Member
Messages
2,051
TiredSam said:
Unfortunately for us Esther Rantzen believes that the Lightning Process cured her daughter of ME, so we'd probably be stuffed approaching them. Would have been a good idea in a perfect world though!

http://www.meassociation.org.uk/201...aughters-illness-daily-mail-12-february-2012/
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If you read the article, there's quite an interesting take on LP:
But when a friend and fellow ME sufferer told us about the positive results of the Lightning Process (a form of cognitive behavioural therapy or neuro-linguistic programming), Emily decided to try it.

It worked, for her, brilliantly. It showed her a way to combat the symptoms that were overwhelming her. So now, at last, she has the energy to catch up on the education she lost, and she is hugely enjoying studying for a degree in psychology. She still has to pace herself – tiredness is a constant background to her life, carrying with it the dread that if she exhausts herself, she might relapse again.
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Hardly the miracle cure that it's supposed to be then. It sounds actually more like they got her pushing closer to her limits, and that the technique managed to dampen some symptoms down, rather than eradicate them. My line on the Lightning Process is that it seems to be doing something for some people, but until we know what it is, and certainly whilst it's being marketed in its current 'cast off your crutches' form, it is potentially very dangerous and also highly exploitative, with it's whole 'why aren't you better yet?' schtick. I do not expect Esther Crawley to get to the bottom of this.

But the really interesting bit is that, in the end, it's clear that Emily never had ME at all; she was in fact suffering from Coeliac Disease. Which means that the effects of LP aren't simply a case of pretending you're well 'til you feel it. Like us, Emily has a biomedical disorder and, whilst it may be possible to override some of the symptoms with LP, telling her that she was cured didn't (and can't) make that go away. It sounds like she took what she could use from it and didn't trouble herself unduly with some of the more cultish aspects.
 
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Large Donner

Large Donner

Senior Member
Messages
866
halcyon said:
It is a fun thought exercise though. I often imagine what would happen if one of the BPS crew leaders came down with the disease. Would it transform the field? Or would they simply be ostracized and cast out with the rest of us heathens.
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They would just bury them underneath the masonic lodge that they all attend.
 
TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
worldbackwards said:
It sounds actually more like they got her pushing closer to her limits, and that the technique managed to dampen some symptoms down, rather than eradicate them. My line on the Lightning Process is that it seems to be doing something for some people, but until we know what it is, and certainly whilst it's being marketed in its current 'cast off your crutches' form, it is potentially very dangerous and also highly exploitative, with it's whole 'why aren't you better yet?' schtick. I do not expect Esther Crawley to get to the bottom of this.
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My line on the LP is that it's a complete load of bollocks from start to finish. We know what it is, even though participants are sworn to secrecy, there are accounts of what happens on an LP course somewhere on the internet. Can't remember where I read it, but the course I read about involved standing on a paper circle chanting, then being told off and bullied if you dared tell the instructor or other participants that it didn't seem to be working for you.

There will be participants, with or without ME, whose symptoms fluctuate, as symptoms do. If an improvement coincides with attending a LP course, the LP will get the credit. If you don't improve, it's your fault for not doing it right.

I don't know why Esther Rantzen dreads her daughter relapsing - she can just send her on another miracle LP course and she'll be right as rain again. Either it works or it doesn't, can't have it both ways.

What especially bothers me about the LP isn't that they just take money off vulnerable people and offer nothing or only harmful treatment in return, plenty of charletans are doing that, but not satisfied with getting away with a tasteless con, they have gone one step further and wormed their way into public policy so people can be threatened with benefits being withdrawn or families of children too ill to go to school can be threatened to attend.

Arseholes.
 
J

John Mac

Senior Member
Messages
321
Location
Liverpool UK
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TiredSam

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
John Mac said:
I thought Esther Rantzen's daughter Emily was eventually diagnosed with Coeliac disease in 2011?
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AlI I saw was the daily mail article, which is when ER claimed LP had saved her daughter from ME. Not being based in the UK, I've no idea what Esther and her daughter have been up to since then. Has she changed her position on ME and CBT since her daughter's diagnosis?
 
J

John Mac

Senior Member
Messages
321
Location
Liverpool UK
TiredSam said:
AlI I saw was the daily mail article, which is when ER claimed LP had saved her daughter from ME. Not being based in the UK, I've no idea what Esther and her daughter have been up to since then. Has she changed her position on ME and CBT since her daughter's diagnosis?
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Yes TiredSam I think she now believes her daughter never had ME but had Coeliac disease all along.

Here's a PR thread from the announcement:


http://forums.phoenixrising.me/index.php?threads/esther-rantzens-daughter-had-celiac-all-along.8655/
 
D

daisybell

Senior Member
Messages
1,613
Location
New Zealand
jimells said:
That means LP "cures" both ME *and* Coeliac !! Hot Damn !! Sign me up :lol:
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The book also claims that it can 'cure' the symptoms of MS....... Not the actual disease, but because symptoms don't necessarily correlate with what can be seen on MRI scans, obviously some of the symptoms of fatigue etc are maladaptive rather than pathological. It's horrifying stuff.
 
jimells

jimells

Senior Member
Messages
2,009
Location
northern Maine
tandrsc said:
It seems to me that a trial cannot take place without participants.

Parents may feel forced into a particular treatment, but they can't be forced into taking part in a trial. If parents just say no the trial will never happen.
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Maybe with the ruckus around PACE the possibility of harms to children will start to get through. It's a tough message to distribute since the psychobabblers pretty much own the press via their SMC public relations firm.

Freedom of the Press belongs to those who own one.
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TiredSam said:
What especially bothers me about the LP isn't that they just take money off vulnerable people and offer nothing or only harmful treatment in return, plenty of charletans are doing that, but not satisfied with getting away with a tasteless con, they have gone one step further and wormed their way into public policy so people can be threatened with benefits being withdrawn or families of children too ill to go to school can be threatened to attend.
Click to expand...

And to add insult to injury, Crawley is delivering clients to Phil Parker, on our research dime! It would also be interesting to know if Phil Parker is "treating" patients for free, or if the study is paying him, or if he is paying the study to sell his product. I smell a huge conflict of interest turd here. How can UK regulators continue to step around it in light of past decisions against Phil Parker. He must be well connected.
 
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