Embargo broken: Bristol University Professor to discuss trial of quack cfs tx

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anni66

mum to ME daughter
Messages
563
Location
scotland
Dx Revision Watch said:
Here in England, when my son reached the age of 17, he had the option of transferring from the outpatient paediatric hospital consultant's care to adult outpatient care (or to be referred to the adult CFS service which is located in a different local hospital) or being signed off from the paediatric consultant and not being transferred to adult outpatient care.

He elected to be signed off from the paed consultant but not be transferred to adult services. So from that point, he ceased attending 6 monthly outpatient appointments. But by that time, his LEA home tuition had ended (we had obtained an extra year of tuition, post-16, in order for him to complete the syllabus and sit an additional GSCE that he had not been well enough to sit the previous year) so he no longer required the input from the hospital consultant and MDT in order to recommend the continued provision of LEA home tuition, which they had been required to do, annually.

This is why I asked at what age your daughter would have the option (or would be required) to transition from paediatric to adult hospital services; or will she remain in paediatrics until she is no longer in the education system?
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Technically she is no longer paediatric.transfer will happen in January as we have last paediatric consult ( for what it' s worth) in December.
We have no specialist cfs/ me services ( given the uk overview this is perhaps not a bad thing), and generally medics pull out bath activity monitoring sheets and try and reverse sleep phase shift. Prescribe for pain and thats it. No curiosity, no understanding of mechanisms ....i have learnt a lot here.
 
Daisymay

Daisymay

Senior Member
Messages
754
Orla said:
ME Association press release http://www.meassociation.org.uk/201...in-young-people-with-mecfs-19-september-2017/
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The MEA press release says:

"The ME Association believes – as it always has – that ME/CFS is not a mental health condition."

This simply isn't good enough.

The scientific evidence, the facts, prove ME is a serious multi-system disease, not psychological.

That ME is a physical disease is fact, not a belief.

This is not being pedantic.

A fact is based on evidence, a belief or point of view has no basis in fact. Beliefs and points of view are opinions strongly held without evidence.

The BPS model of ME is a point of view or belief, with no evidence to back it up.

The facts, the scientific evidence invalidates the BPS belief that ME is psychological.

MEA and other organisations need to grasp this and be very careful in the wording of their press releases and websites.

The press release should be stating loud and clear that the scientific evidence shows ME is an organic disease and not psychological, not leaving any doubt in the minds of journalists.

The way it is written, saying MEA believes it is organic is playing into the hands of the BPS brigade and the SMC.
 
Esther12

Esther12

Senior Member
Messages
13,774
Daisymay said:
The MEA press release says:

"The ME Association believes – as it always has – that ME/CFS is not a mental health condition."

This simply isn't good enough.

The scientific evidence, the facts, prove ME is a serious multi-system disease, not psychological.
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I'd prefer that they just avoided the topic, as they're not going to be able to go into all the necessary details in a press release. I'd have thought that lots of conditions traditionally thought of as 'psychological' could be classed as serious multi-system diseases. Given the prejudices there already are about ME advocates in the UK press, it's probably best to focus on the specific problems with LP, rather than present it in terms of some 'psych vs biological' debate.
 
lilpink

lilpink

Senior Member
Messages
988
Location
UK
Daisymay said:
The way it is written, saying MEA believes it is organic is playing into the hands of the BPS brigade and the SMC.
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Not helped by remaining part of the CMRC. Everyone seems to be leaving the sinking ship.... how entrenched does the MEA really have to be on this? It's absurd. The MEA's 'beliefs' coupled with their happiness to be ruled by EC herself at the CRMC does rather weaken their position when it comes to decrying the utter nonsense that LP is.
 
Dx Revision Watch

Dx Revision Watch

Suzy Chapman Owner of Dx Revision Watch
Messages
3,061
Location
UK
From the original LP pilot study thread:

http://forums.phoenixrising.me/inde...rch-study-on-children.2695/page-17#post-63729

The Old Bailey Online site is a fully searchable collection of 197,745 criminal trials held at London's central criminal court:

In the 1700s, Old Bailey court reports included advertisements and this one caught my eye:

Old Bailey Proceedings, 27th February 1712:

"All Melancholy, Hysterical and Hypochondriacal Distempers, which variously
affect the Mind with strange Fears, and dismal Apprehensions, Paintings,
and Sinkings of the Spirits, great Hurries, Restlesness and Disquietment
(little understood, and seldom cured by any common Means) also Pains and
Giddiness of the Head, Risings to the Throat, Sick-fits, Tremblings,
Oppressions of the Heart, or any other Disorders caus'd by Vapours, are
successfully cured (with God's Blessing) by a Physician well experienc'd
therein, and of more than 20 Years Practice in those deplorable Cases; who
also cures all kind of Fits, tho' strange and violent, if curable; which he
informs on sight of their Water. Living next door to Shadwell Coffee-House
in Upper-Shadwell, near London; where those that have occasion, and live
remote, may direct their Letters, and they shall be speedily answer'd, or
attended on, if desired."

Well little changes, because in 2010, the sites of some Lightning Process practitioners are still making the following claims...
 
U

user9876

Senior Member
Messages
4,556
suffolkres

suffolkres

Messages
17
Philipp said:
I can't find this information at first glance but maybe I just missed it because I'm a bit foggy:
How many hours/sessions of treatment does the £620 buy?
How much is that compared to 'regular' therapy?
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From a sufferer on my Facebook page:
"Here's an account I wrote around 2009/10.

I think people should know just what LP is.
I am almost ashamed to say that I tried LP last year. After ten years of this dreadful illness I think my reasoning has become unreliable as I am so desperate to get better and get my life back to normal.
The great publicity given to LP as a cure for M.E. is hard to ignore and as you read the 'recovery' stories the thought of good health overcomes any misgivings you might have about this mysterious 'cure'. The fact that there is NO diagnostic test for neurological M.E. leaves one with the question of exactly who does have M.E. rather than chronic fatigue or depression. This miracle cure claims to cure a disease of which medical research has not yet found the cause (impossible).
The course consisted of three days from 10am until 2pm with a half-hour break for tea and biscuits (no lunch). The cost was £880.00 - plus two nights in a nearby hotel (as the coach advises to stay away from home and look on this as a life-changing holiday).
There were four people on the course, so that's £3520.00 for the coach for just over ten hours work. Not bad wages! The coach was very friendly, caring and convincing he could teach us how to recover. He told us he had recovered from M.E. after seven years and been in a wheelchair at one stage. Another lady who was learning to become a coach was taking notes and observing everything. She too told us she had had M.E. but was now recovered by the process.
We were not allowed to discuss the process with other sufferers but just to do it and recover. We were told to cut off all contact with other M.E. sufferers and when asked about LP to say we were cured. We were told to ignore symptoms and keep saying we were cured regardless. I know this sounds crazy but the coach was excellent at his job of VERY high-pitched sales and the people he was selling to were very desperate to get better. The product he was selling us was positive thinking; nothing more, nothing less.
The Lightning Process is:
Believe the Lightning Process will cure you.
Tell everyone you are cured.
Stand on paper circles with some key words written on them.
Learn to say a rhyme when you feel symptoms, no matter where you are, and as many times as it takes to make the symptoms just go away!
Speak in positive words and think with positive thoughts only.
Shout "Stop!" at every symptom.
You are responsible and choose to have M.E. - you must choose a life you love.
If the process is not working, you are not doing it right.
That's it, believe it or not. Sounds stupid, I know, but these are highly-trained life coaches and after handing over £880.00 we all tried really hard to give it our best shot. Not one of the four sufferers recovered and from talking to them I realised they were extremely sick, desperate people who, like myself, would do anything to get better.
It's sad that we have to revert to every charlatan who looks you straight in the eye and says they can cure you. Cure you of what? So we are back to the same scenario.
Until there is a diagnostic test for neurological M.E. no one can cure us. You cannot treat a disease until you know the cause.
Many people self diagnose M.E. Many doctors diagnose M.E. but the average GP has no training in the illness. Many people suffer from depression and would probably benefit from LP but I can assure you no one can cure neurological M.E. yet.
I hope my story helps others save their £880.00. Just send it to "ME Research UK", as with enough funds they will find the cause - and indeed cure - for neurological M.E."
 
Orla

Orla

Senior Member
Messages
708
Location
Ireland
An account from a facebook friend regarding her experience I think this is the same person as suffolkres friend)http://forums.phoenixrising.me/index.php?members/suffolkres.24659/

QUOTE:
"I had an acute onset and went from a hardworking person to bedbound overnight.
In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, £880.00 as I had long lost my job, and went for it.

There were 3 other ME patients, one Fibro and ME, at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits.
We were told not to discuss the content of the course with each other during the breaks. We learned the ‘affirmation’ and stood on the floor on paper circles with key words written on them.

Here is the big secret of what we had to say while standing on paper circles -
: WHEN YOU FEEL A SYMPTOM
:SHOUT- STOP! (stand on the paper STOP)

: LOUDLY SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
: SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
: SAY- I CHOOSE THE LIFE I LOVE

: SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE WAY (you are being your own coach here)

: ASK YOURSELF – WHAT DO I WANT?
: ANSWER YOURSELF- I WANT ENERGY AND HAPPINESS LIKE (you say something that means energy etc. to you)

: ASK YOURSELF- HOW WILL I GET THIS?
: TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT, EVERY EMOTIONAL BEHAVIOUR AND DOING THE LIGHTNING PROCESS.
There are a few more short affirmations and that's it......you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!!
These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS.
The four of us all were ‘high’ for a few days, weeks or months and did indeed do more than usual but sadly all relapsed."
 
Cheshire

Cheshire

Senior Member
Messages
1,129
https://twitter.com/i/web/status/910274665221906433

I didn't know about this study.
Mostly positive experiences were reported of the Lightning Process. Two reported dissatisfaction and no improvement, while seven were satisfied and were much improved. Particular helpful aspects were the theoretical rationale, practical exercises, and the technique they learned. Less helpful aspects were the intensity and short duration of the treatment with little follow-up, the secrecy surrounding it, and feelings of being blamed if the treatment did not work.
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The Lightning Process for young people with CFS/ME encompasses many positive aspects, particularly the practical aspects of the treatment programme. The more extreme position taken by the Lightning Process in denying the limitations of the illness seem to produce divergent results in various young people; some found it liberating and therapeutic, whilst others did not respond well to it and were left feeling guilty and blamed.
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Link: https://sci-hub.cc/https://www.ncbi.nlm.nih.gov/pubmed/22989369
 
A

anni66

mum to ME daughter
Messages
563
Location
scotland
Esther12 said:
This?



What "over-simplistic and largely psychological model of ME/CFS causation that is being put forward to patients"? It's a long time since I read the Lightning Process materials, but from what I remember, it seemed a convulouted mess of almost everything Phil Parker had ever half read about, rather than being simplistic. It also kept trying to emphasise how very biomedical/neurological it was, but again, in a confused mess of a way. Also, there's just the vague reference to biological research, which in itself does nothing to show that LP should not be used, but will make it easier to let Crawley ramble on about how people are concerned about her work because they 'fear it indicates psychological causation, when really all of the leading researchers will tell you that our minds inevitably affect the way our brains and bodies work. We really need to get past this simplistic dualism which has caused so much needless rancour in this area. Thankfully many patients do understand that... etc, etc'.
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Orla said:
An account from a facebook friend regarding her experience I think this is the same person as suffolkres friend)

QUOTE:
"I had an acute onset and went from a hardworking person to bedbound overnight.
In a desperate attempt to recover I decided to try LP after reading stories of severely affected M.E. patients who had recovered. It all sounded so convincing and after a phone consultation with a LP coach I felt very positive I was doing the right thing. I borrowed the money from my parents, £880.00 as I had long lost my job, and went for it.

There were 3 other ME patients, one Fibro and ME, at the same course none of these people nor myself recovered. The course was over 3 days from 10am-2pm with a break at lunchtime for tea and biscuits.
We were told not to discuss the content of the course with each other during the breaks. We learned the ‘affirmation’ and stood on the floor on paper circles with key words written on them.

Here is the big secret of what we had to say while standing on paper circles -
: WHEN YOU FEEL A SYMPTOM
:SHOUT- STOP! (stand on the paper STOP)

: LOUDLY SAY- I HAVE A CHOICE ( stand on the paper CHOICE)
: SAY- YOU CAN CHOOSE THE PIT OR THE LIFE YOU LOVE ( you then stand on the LIFE YOU LOVE circle)
: SAY- I CHOOSE THE LIFE I LOVE

: SAY- WELL DONE, YOU ARE A FANTASTIC GENIOUS, YOU ARE ON TRACK! I AM WITH YOU EVERY STEP OF THE WAY (you are being your own coach here)

: ASK YOURSELF – WHAT DO I WANT?
: ANSWER YOURSELF- I WANT ENERGY AND HAPPINESS LIKE (you say something that means energy etc. to you)

: ASK YOURSELF- HOW WILL I GET THIS?
: TELL YOURSELF- BY STOPPING EVERY NEGATIVE THOUGHT, EVERY EMOTIONAL BEHAVIOUR AND DOING THE LIGHTNING PROCESS.
There are a few more short affirmations and that's it......you are cured of M.E. We all DID leave on the third day full of hope and newly found confidence and told that no-matter how we felt in the future ALWAYS SAY WERE WERE CURED OR THE PROCESS WILL NOT WORK !!!!
These coaches are very good at their job but I can assure you they can not cure you of M.E. Think about it PAPER CIRCLES AND AFFIRMATIONS.
The four of us all were ‘high’ for a few days, weeks or months and did indeed do more than usual but sadly all relapsed."
Click to expand...
And this is what research money is spent on.....
 
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