Discussion in 'General ME/CFS News' started by Jenny, Mar 4, 2010.
THat's great news fingers. Keep us posted.
No worries at all fingers. Personally, I'd rather have something double posted than not posted because you weren't sure.
Posting to keep posted
So far I've spoken with ME association and RNHRD.
MEA is strongly opposed to this study - watch their space.
I spoke with the young lady who issued the media release at RHNRD and expressed my concerns:
- first, damage to their own PR and credibility through engaging with the LP organisation
- second, but foremost, risk of wrong treatment of children
- third, wrong conclusions through lack of knowledge, poor management, wrong measures, lack of rigour in selection criteria, failure to evaluate the LP and the supplier properly before engaging children et.etc.etc
She obviously could not engage in a detailed clinical discussion, through lack of knowledge, but promised to discuss my points first within the communications team, then to pass on as appropriate within the organisation. I've left my contact details and offered my input and experience as sufferer and failed student of the LP (guess I'm just not very bright :tear
This is just a start, I will be following up on this regularly. Please do not all pick up the phone as they will just get swamped and likely refuse to talk.
Fingers of Endland
I dont know what it is but a RCT it aint.Who exactly are action for ME and who funds them?
CBT and NLP I cant think of a more toxic combination unless of course you include the hogwash too! Unethical and inhuman
Personally, I'd love it if LT turned out to be really effective. It just seems so very quacky - it would be a good punchline to eight years of illness if this was how I recovered.
Yep, Esther, that's how I saw it too (except for 8, read 20.....and for LT, read LP). Call me naiive, but as the universe is so complicated, and we all actually know didly squat about it, I find it hard not to be open-minded about everything.....at least until I know the facts. I now know that the LP is not effective, not for me and what I suffer from, at least. You may have to find out for yourself, as it stands.
Wonder what Peter Spencer reckons? One for tomorrow.
In case anyone hasn't seen it, there is a Phoenix Rising blog about The Lightning Process, with a number of comments after it, here:
The same blog seems to be posted under a different url (with different comments), here:
I'm afraid that I got a bit worked up about The Lightning Process and had a bit of a rant in the comments section of the Phoenix Rising blog (see the first link in my message above).
I hadn't been following this thread, and it seems that you've all been having a very intelligent discussion.
For the sake of discussion, I'll re-post one of my comments from the blog, below, although I think most of what I say has been covered by this discussion thread already.
A big thank-you to fingers, for getting on the phone about this...
I will try to get round to writing some letters, but I think I won't have the head space to get around to doing anything about this one...
But I think it's important to tell people how dangerous this study could be for the kids.
Fingers, have you thought about contacting AYME? There's a small chance that they might take an interest in this if they look out for the interests of children with ME. I've always found Action for ME exceptionally friendly and open to dialogue.
Here's a copy of my comment which I posted after the blog:
As for the study that is being carried out on children in the UK, I just do not understand how they can get ethical approval for it. The children will be told that they are going to do a course which will make them better. So they will eagerly embark on the course but without any meaningful insight into the nature of the process. This will, in effect, be coercion because the children will not be mature enough tomake their own decisions, but will simply be told to undertake the course by either their doctors or parents. When they are on the course they will be told that they are not really ill, and must not think about, or talk about their illness. They will be told that there is nothing wrong with them and they must never again say that they are feeling ill, no matter how they may be feeling. If they begin to feel their symptoms worsening, then they will be told to never mention it again, and that they are failing the course, and that they are thinking badly (i.e. they are bad children). They will be taught to ignore their natural body processes and to lie about how they are feeling. Finally, when the course hasn't worked for them, and they experience a worsening of symptoms, they will be told it is because they didn't follow the instructions properly and that they are failures. This will make them believe that they are bad children. The trainers will not have any medical training, or training in medical psychology and so will the children have proper protection from exploitation? The children will be told not to recognise their symptoms. They will not be allowed to slow down, as any normal person would respond to feeling fatigued and exhausted. Finally, as the children crash into the dark depths of a relapse, their parents will be accused of Munchhausen's, and the children will be accused of being fakers, malingerers, and school phobics, and dragged off to a care home where they will suffer even more degradation of their human rights, and their health. This may sound like an outrageous and unlikely representation of what will happen, but it has happened time and time again with people with ME. We have been dragged into psychiatric wards, parents have been accused of Munchausen's, and children are accused of being school phobic and of having psychiatric issues. These questionable techniques (The Lightning Process is not a clinically proven treatment) seem to only encourage this sort of abusive behaviour by the medical profession. It almost seems like a Nazi (and I don't use the word lightly) approach to medicine to put children on this course: disallow the disability; don't recognise or respond to the needs of the child patient; condemn the patient as a failure and second rate citizen; a survival of the fittest mentality; disabled people are considered second-rate citizens (illness and disability is explicitly regarded as a failure, and the children will be told this!) It seems to me that children run a serious risk of being psychologically damaged by being put through this sort of abuse.
The Lightning Process is not a medical treatment, and neither has it been studied medically or scientifically, and I think that we, on the phoenix rising forums should campaign to get this children's study stopped before it does severe damage to these children. Doing a study on volunteer adults, who have all of the information about it, is one thing, but to manipulate children is something else altogether.
Well done on this. Somebody who is involved in research on another forum said probably the best way to stop it is to contact the ethics committee(s) and complain.
Thanks Bob, I'll check that out.
FYI, I've spoken with the PA to the board at RNHRD, and am awaiting a response to my e-mail tio Peter Spencer (non exec dir. there + CEO at AFME as posted by Islandfinn).
Which member of the Board of Trustees has said that the ME Association is strongly opposed to this study?
Dr Crawley was a member of the NICE Guideline Development Group and is a member of the MRC's Holgate chaired, CFS/ME Expert panel.
The MEA's Dr Charles Shepherd has a history of not opposing people holding positions like Dr Crawley.
Can we look forward to a position statement from the MEA?
How do we contact the ethics committee? Does anyone know?
She mentioned the university ethics committee so one might not need to know the exact person.
The press release had:
so it must be connected with that.
EC is a Senior Lecturer at the University of Bristol.
Sorry, that's got a bit confused.
The board member I am addressing Peter Spencer at AfME, also non--exec at RNHRD.
I have not spoken with Charles Shepherd, although would expect he will be in line with the MEA's position of opposition to the study.
I believe that the MEA will be proactive in opposing this, but don't know whether they will issue a statement - do we need one? Actions speak louder than words.
Hi fingers, I expect that you know this already, but just in case you don't...
AYME and AfME are sister organisations, but as far as I can see, they run their affairs separately.
I think that AYME’s present Chief Executive Officer is Mary-Jane Willows.
Thanks for all this amazing activity you've embarked on!
Thanks goodness that someone is looking out for these kids!
Just as an extra bit of interest, Dr Esther Crawley has managed to get a grant for 730,000 to investigate ME in children for a study she is about to start:
That's a huge amount of money compared with other funding for ME in the UK.
Can we get this clear, have you spoken to or emailed a member of the ME Association Board of Trustees?
Is so what was their response?
Tony Britton is not a member of the BoT and neither is Gill Briody (MEA HQ, salaried member of staff and Company Secretary).
Most defintely. If the MEA is claiming to oppose this study then the BoT should be prepared to put that in writing.
Don't accept anything less. Shepherd is not comfortable rocking the boat.
So you need a written statement on behalf of the BoT.
Apologies if we've had this already, but here is the full press release regarding the study:
http://www.afme.org.uk/res/img/resources/RCT on LP March 2.pdf
It has all the relevant info, and explains where the funding is from.
(please note that this press release is not from AfME, it is just on their 'news' section of their website)
Here's the original press release on Bristol University's website:
These are the trusts providing the funds for the research:
So maybe we need to contact these trusts, pointing out: the dangers of the study; the dangers of The Lightning Process; the amateur and unproven nature of The Lightning Process; and our concerns regarding the (ethicalness? ethicity? ok, i'm giving up with that word! lol) ethical implications.
You can also try a Google Site Search
Separate names with a comma.