Something different: Apparent real recoveries from Toby Morrison's CFS Health Centre in Australia

[Sharon1402]

@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.

Yes I am aware of how the clinic was formed but other than that it has no connection with the NHS one.

The therapists have never implied it is a psychological or mental health issue. Their explanation is based on the hypothalamus being out of sync and affecting the hpi axis.

 

[MeSci]

Yes I am aware of how the clinic was formed but other than that it has no connection with the NHS one.

The therapists have never implied it is a psychological or mental health issue. Their explanation is based on the hypothalamus being out of sync and affecting the hpi axis.

One might then ask how they intend to fix the HPA (sic) axis with CBT,
Mindfulness Based Cognitive Therapy MBCT and Acceptance and Commitment therapy ACT.

 

[Sharon1402]

One might then ask how they intend to fix the HPA (sic) axis with CBT,
Mindfulness Based Cognitive Therapy MBCT and Acceptance and Commitment therapy ACT.

Predictive text eh! It's a bugger!
The techniques they employ are to calm the symptoms thereby working backwards to calm the hypothalamus in a nutshell. The gupta technique works in a similar way but from the top down so to speak. But I suppose you won't like that either? Or the Lightning process. And people do recover using these therapies.
Why can't people just be glad someone recovered from this damned illness no matter how? And use the experience to maybe learn something? By closing off acceptance to people's recovery you could be shutting yourself off from that one thing that might just might make a difference.

 

[Min]

Predictive text eh! It's a bugger!
The techniques they employ are to calm the symptoms thereby working backwards to calm the hypothalamus in a nutshell. The gupta technique works in a similar way but from the top down so to speak. But I suppose you won't like that either? Or the Lightning process. And people do recover using these therapies.
Why can't people just be glad someone recovered from this damned illness no matter how? And use the experience to maybe learn something? By closing off acceptance to people's recovery you could be shutting yourself off from that one thing that might just might make a difference.

Given that we have no diagnostic test, where is your actual proof of recoveries?

Where is your proof that the hypothalamus needs calming in myalgic encephalomyelitis, or that the commercially sold 'treatments' you cite do this?

The people I know who have done Gupta and LP have wasted an awful lot of money as they made no improvements in their health.

If you really want us to 'learn something' we shall need evidence, otherwise it looks as if you are promoting expensive psychobabble. I do assure you were are fed up with psychobabble.

 

[JAM]

Pretty sure that if that approach was going to work, it would have worked for me as a massage therapist, personal trainer, meditation teacher, tai chi and yoga practitioner, who studied herbs and natural healing for 15 years. It took that long for me to find OLE, and that does seem to be working.

 

[Sharon1402]

Whats OLE?
There are stories of recovery all over the place from people doing both Gupta and LP. There have been a number recently in the press who have done LP and I know a number of people who have done it and recovered and I personally know 2 who used Gupta. What other proof do you want? These people were diagnosed with ME/CFS. In my opinion, and it's only my opinion, I think there are multiple causes of ME/CFS and these therapies will help some but not others. Similarly there are some cancers which are treatable some which aren't but those who have had treatment and recovered does that mean they didn't have "real cancer"? The problem is the "experts" don't even know so until they do we have to try what resonates with us in the hope it might work. If it's not for you then so be it but it doesn't mean it might not help someone else.

 

[golden]

Why doesnt the NHS then give us the money instead of psychologists?

Patients can then spend it on whatever they feel may help them.

I would spend it on organic raw food and The Perrin Technique. Which is very expensive. i cant get consistent trt as i dont have the funds and have been too ill to even o get through the benefit process.

Not interested in CBT centres as they are useless. Close them down, sack the staff for misleading M.E. patients and if they wont give us the individual funding divert it all to the Children who are going without limbs and other important operations because the NHS says its short of funding.

OLE = olive leaf extract.

i recently tried it but it made me really ill. bp dropped even lower i am told it does this.

 

[Snow Leopard]

Their explanation is based on the hypothalamus being out of sync and affecting the hpi axis.

Unfortunately an explanation I've never found satisfying after spending many hours to research it. Attempts to dig deeper into this (science wise) have not led to any answers, since the collection of studies showing overall picture of hormone and receptor expression and activity don't really show anything especially interesting/unexpected that would gel with the 'HPA axis dysfunction' hypothesis. There were some interesting and more sophisticated papers by Broderick and colleagues, but they are still unsatisfying as they don't actually explain the patterns observed. I have discussed my own hypotheses about this on the forum in the past, I'd have to find them again though...

There are stories of recovery all over the place from people doing both Gupta and LP. There have been a number recently in the press who have done LP and I know a number of people who have done it and recovered and I personally know 2 who used Gupta. What other proof do you want? These people were diagnosed with ME/CFS. In my opinion, and it's only my opinion, I think there are multiple causes of ME/CFS and these therapies will help some but not others. Similarly there are some cancers which are treatable some which aren't but those who have had treatment and recovered does that mean they didn't have "real cancer"? The problem is the "experts" don't even know so until they do we have to try what resonates with us in the hope it might work. If it's not for you then so be it but it doesn't mean it might not help someone else.

The thing about anecdotes is we have no way of knowing whether these improvements were spontaneous or not. There are selection biases involved eg 50 people try something, 10 people improve and those 10 people think it works and so go tell everyone else. The other 40 just move on to something else. Meanwhile, it is possible that 20% of people may have spontaneously improved anyway so we have no way of knowing if the treatment actually did anything. This is where controlled trials come in.

I personally don't like to get bogged down in the details (the thresholds of a case definition can be a case of how long is a piece of string), but I do believe in high quality evidence.

This means either randomised double blinded trials, which unfortunately are only applicable for pharmacological treatments, or randomised trials using objective evidence as primary outcomes (for nonpharmacological treatments).

For ME and CFS it doesn't have to be complicated - simply using actigraphy to measure activity levels before and at the >6 month followups, and neuropsychological testing (which can reflect any improvements in concentration due to less fatigue).

I am not a fan of studies that are not blinded, that simply use questionnaires as there are many, many uncontrolled biases involved.

 

[Min]

Many of the people reporting recovery from LP in the press turn out to be so-called therapists profiting from it. IThere is another side to their stories:

http://sallycats.hubpages.com/hub/The-Lightning-Process-Didnt-Work-For-me

At least Gupta does or did offer a refund if it doesn't work.

Do not know what those who supposedly recovered fby LP suffered from, your stating that you know people who have done so is not any form of proof. There are diagnostic tests for cancer.

 

[Sharon1402]

Why doesnt the NHS then give us the money instead of psychologists?

Patients can then spend it on whatever they feel may help them.

I would spend it on organic raw food and The Perrin Technique. Which is very expensive. i cant get consistent trt as i dont have the funds and have been too ill to even o get through the benefit process.

Not interested in CBT centres as they are useless. Close them down, sack the staff for misleading M.E. patients and if they wont give us the individual funding divert it all to the Children who are going without limbs and other important operations because the NHS says its short of funding.

OLE = olive leaf extract.

i recently tried it but it made me really ill. bp dropped even lower i am told it does this.

So a classic example of something working for one person but not for another

 

[Undisclosed]

Posted this on another thread, but it seems appropriate to put it here too -- http://www.sayer.abel.co.uk/MESNORFOLK/LP.html

 

[Undisclosed]

We are closing this thread for moderation purposes.

Thank you.

Kina.

 

[Undisclosed]

We are now re-opening this thread.

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[golden]

So a classic example of something working for one person but not for another

Not really a 'classic' example @Sharon1402, no.

I have had serious blood pressure issues. I was saying that it may be that taking the OLE is causing bp to drop further.

It also maybe that OLE is doing a good job. But that my system can not handle it, that its interfering with my gut, or maybe its just a bad reaction to it.

I cant stay on it for long enough to find out. A few days, tops.

Also when people say something is working for them, it may not be so. It maybe that in a year or two down the line gives a better perspective if something truly helped.

 

[Sharon1402]

The trouble with this illness is its not one size fits all. Some things work for some and not for others. I believe this is due to the fact that ME is such an umbrella term and depending on what caused your illness in the first place probably determins what works and doesn't.
That's just my opinion from people I've met along the way and what's working for them but done nothing for me. I'm trying to recover as holistically and naturally as possible through diet, supplements and pacing and so far it seems to be working for me. We just have to find the thing that works no right or wrong.

 

[golden]

I disagree @Sharon1402. And it came as a big shock to me to find out that M.E. is a well defined disease which can be easily tested for.

It is not an umbrella illness. See here:

http://www.name-us.org/DefintionsPages/DefHyde.htm

However CFS is a missed diagnoses - an umbrella term for a symphony of sickness.

And so patients with thyroid disorder, vitamin b12 deficiency, candida overgrowth, iron deficiency, lyme disease, heart disease, cancer, etc.

Have been lumped together under a CFS label been told to ignore their symptoms and do CBT and GET to treat or make themselves a bit more positive.

 

[MeSci]

I'm trying to recover as holistically and naturally as possible through diet, supplements and pacing and so far it seems to be working for me.

Many of us here are doing that too. What has Toby Morrison added to it?

 

[Sharon1402]

Many of us here are doing that too. What has Toby Morrison added to it?

Toby promotes this way of recovery too and if you start off not having a clue about pacing and rest and restorative exercise (if it's right for you I hasten to add) along with mindset, acceptance and a focused realistic approach then he is a good guide. He is very supportive and positive. But I am not getting into any more argy bargy over this again. I like him. He's helped lots of people. End of.

 

[Sharon1402]

I disagree @Sharon1402. And it came as a big shock to me to find out that M.E. is a well defined disease which can be easily tested for.

It is not an umbrella illness. See here:

http://www.name-us.org/DefintionsPages/DefHyde.htm

However CFS is a missed diagnoses - an umbrella term for a symphony of sickness.

And so patients with thyroid disorder, vitamin b12 deficiency, candida overgrowth, iron deficiency, lyme disease, heart disease, cancer, etc.

Have been lumped together under a CFS label been told to ignore their symptoms and do CBT and GET to treat or make themselves a bit more positive.

If it's testable why isn't it tested for then? I've never been offered any kind of test for it. How do you get tested for it?
The NHS lump it as ME/CFS and this is what I am referring to as being an umbrella diagnosis.

 

[golden]

If it's testable why isn't it tested for then? I've never been offered any kind of test for it. How do you get tested for it?
The NHS lump it as ME/CFS and this is what I am referring to as being an umbrella diagnosis.

http://m.hfme.org/site/mobile?dm_pa...sig_permission_level=0&fb_sig_network=fw#1011