I would like to know which clinic this is too please as it just sounds wonderful.
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Something different: Apparent real recoveries from Toby Morrison's CFS Health Centre in Australia
- Thread starter oryx-
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I would like to know which clinic this is too please as it just sounds wonderful.
Me too, where is this marvellous UK clinic that we have never heard of? We promise to form an orderly queue.
The typical one I attended made me permanently worse with its graded exercise, and the only other so-called 'treatment' it offerered, cognitive behaviour therapy, made me angry as it was so offensive. Absolute nonsense for a neurological illness, and I do not want to pay £250 for 'bucketloads' more of similar 'treatments'.
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Revel
Senior Member
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- 641
If you live in the UK, and you are bedbound/housebound from ME/CFS, you are invisible to the NHS.
l look forward to the day when my local NHS CFS clinic reaches out to me with their progressive and alternative therapies and treats me in the comfort of my own home as Sharon1402's clinic is currently contemplating
.
If they wish to encourage me not to return to the lifestyle that apparently caused my illness in the first place, I shall be happy to oblige. Since I got sick in Junior School my uniform no longer fits and I don't think my Brownie pack would take me back at 49 . . . .
l look forward to the day when my local NHS CFS clinic reaches out to me with their progressive and alternative therapies and treats me in the comfort of my own home as Sharon1402's clinic is currently contemplating
.If they wish to encourage me not to return to the lifestyle that apparently caused my illness in the first place, I shall be happy to oblige. Since I got sick in Junior School my uniform no longer fits and I don't think my Brownie pack would take me back at 49 . . . .
Little Bluestem
All Good Things Must Come to an End
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- 4,930
If too busy of a lifestyle caused this illness, then every nurse, teacher, ER doctor, attorney, and mom on the planet would have it.
just sayin'
but sorry you have been ill so long
snowathlete
Senior Member
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So true. Someone pointed out once that I worked hard before I got ill so that was probably what made me ill. I pointed out, well yeah I worked hard but so did most people I worked with and I worked with 20,000 other people in my company. That's how life is for many millions of people in the UK - blimin' hard work, so if that's the cause then where are the many millions of sufferers?
MeSci
ME/CFS since 1995; activity level 6?
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Not necessarily. The cause is unlikely to be just one thing, but the overexertion could push us over the edge. Or the exertion has depleted our immune systems and then something else hits. Or similar.
Snow Leopard
Hibernating
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In any event, it is nonspecific and can only be considered a risk factor at most, and irrelevant at least.
@WillowJ the "busy lifestyle" theory always makes me smile.
Maybe I overdid the homework. Or was it all that smokin' , drinkin' and recreational drug takin', not to mention those late, late nights. Us 9 year olds sure know how to party hard
You gave me all the cues, but I missed your sarcasm the first time.
Thanks for making me laugh.
Nielk
Senior Member
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- 6,970
I just saw a short interview with Toby here on a news program in the US. (Fox News).
He basically explained that his proposed treatment for CFS, is three pronged: Diet. Exercise. Acceptance. He went on to promote his book and website.
He is not the only one promoting this type of GET, CBT treatment. There are others usually promoting books and videos. The danger with this type of promotion in the media is that it strengthens the false belief that this illness is just deconditioning and/or all in our heads.
I'm sick and tired of these people making financial gains with these type of false claims.
If it was truly possible to treat us in this healthy lifestyle type of way why are there between one and three million sufferers still in the US ?
Are we just all so ignorant that we don't know what a healthy diet and attitude really is?
We lived healthily for fourthy years and then boom - we just forgot how to do that. We need to spend a lot of money to have an unknown stranger without medical background to tell us how to live healthy?
Stop this madness already.
He basically explained that his proposed treatment for CFS, is three pronged: Diet. Exercise. Acceptance. He went on to promote his book and website.
He is not the only one promoting this type of GET, CBT treatment. There are others usually promoting books and videos. The danger with this type of promotion in the media is that it strengthens the false belief that this illness is just deconditioning and/or all in our heads.
I'm sick and tired of these people making financial gains with these type of false claims.
If it was truly possible to treat us in this healthy lifestyle type of way why are there between one and three million sufferers still in the US ?
Are we just all so ignorant that we don't know what a healthy diet and attitude really is?
We lived healthily for fourthy years and then boom - we just forgot how to do that. We need to spend a lot of money to have an unknown stranger without medical background to tell us how to live healthy?
Stop this madness already.
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Sushi
Moderation Resource Albuquerque
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Not to be repetitive, but Ugh!
catly
Senior Member
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- outside of NYC
Not to be repetitive, but Ugh!
Totally UGH! Two friends of mine texted me this afternoon to turn on Fox to watch this Toby Morrison guy. I had to reply that it seems the only people that recover are those who have books or clinics to promote.
Gingergrrl
Senior Member
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So glad I did not see him on TV and don't have the patience right now for that level of BS.
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I research constantly and am currently following the research being done my Dr Ian Lipkin as well as a number of other ongoing projects. I follow a couple of forums dedicated to Dr Sarah Myhill. I don't see people getting better any faster however! In the meantime, as no one else appears to have any answers we must do what we think resonates with us. I have improved considerably in the last 6-9 months by following what my local clinic have advised and complementing with Toby's program. My clinic is based in Leeds. They contribute to things produced by actionforme in terms of literature and information for patients and are probably one of the leading clinics in the country. I am involved in voluntary work with the clinic looking at the service they provide as they are constantly striving to improve it within the constraints they have within the NHS. The therapists are keen to offer the best advice they can. They do NOT promote GET at all. This has never once been mentioned to me.
We must be open minded I believe and look at what we can do to improve our situation. Let's face it no one else is rushing to help us are they?
We must be open minded I believe and look at what we can do to improve our situation. Let's face it no one else is rushing to help us are they?
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MeSci
ME/CFS since 1995; activity level 6?
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- Cornwall, UK
Actually there are quite a lot of scientists trying to help move knowledge and treatment of ME forward. They are keen to help. It is NICE who are continuing to promote CBT and GET to health professionals, thanks to the long-term influence of psychoquacks. The health professionals in turn are pushing this pointless treatment on patients.
Leeds CFS/ME clinic have a bad name amongst the more knowledgeable ME sufferers, at least since they dumped proper science (immunology).
Action for ME also have a bad name due to their long association with psychoquacks and their continued failure to criticise psychoquackery such as the PACE trial.
I emailed them soon after they published a summary of findings from the trial, with a preliminary critique. They never even replied.
Leeds used to have GET mentioned on their website but I see they have removed it. Here is their treatment page. They do mention 'rehabilitation' a lot, which I have previously found to mean CBT/GET.
There is more info about the clinic here and here. There seems to be an overwhelming emphasis on fatigue.
BTW a lot of people get what appears to be a placebo-type response to psychoquackery, only to have a serious relapse, sometimes a year or more later.
We need to address the underlying causes scientifically.
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I have had nothing but positive experience with the Leeds clinic. Have you attended there ? I doubt you have. I have also come across numerous people who either have no clinic in their area so no chance of help or have had nothing but negative experience. I feel I am lucky to have the service. Unfortunately as it is an NHS clinic they're constrained by the NHS guidelines. The therapists however are very open minded and open to any discussion or suggestion to help with personal recovery. As there are currently no tried and approved drugs or indeed proven theories they are restricted to what they can do. Yes there is lots of research going on but as yet no proven conclusions. One day hopefully there may be.
Incidentally one of the links you posted is to the yorkshire fatigue clinic which is private and nothing to do with the NHS one
fibrodude84
Senior Member
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- 191
I don't doubt his story and getting better but I do doubt his program. He had CFS triggered by a virus and maybe his body just needed time to heal and he's ok now but that may just be lucky for him. He also was recently on Carol Alts program and looks exhausted and not as great to me. Maybe he was in remission and he is beginning to relapse. I hope that's not the case for him but given his business he would likely try to hide the fact if he can.
Revel
Senior Member
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@Sharon1402, the Yorkshire Fatigue Clinic was formed by the consultant physician and occupational therapist who were orginally part of the Leeds NHS CFS clinic.
They were "let go" in favour of a liaison psychiatrist. This allowed for a cut in clinic funding and reinforced the theory that CFS is largely a mental health issue. I don't call that a progressive service, but if you have gained from it I am glad for you and wish you continued improvement.
They were "let go" in favour of a liaison psychiatrist. This allowed for a cut in clinic funding and reinforced the theory that CFS is largely a mental health issue. I don't call that a progressive service, but if you have gained from it I am glad for you and wish you continued improvement.