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

[Sharon1402]

http://m.hfme.org/site/mobile?dm_path=/metests.htm&fw_sig_potential_abuse=1&fw_sig_tier=1&fw_sig_partner=webs&fw_sig_api_key=522b0eedffc137c934fc7268582d53a1&fw_sig_time=1412531568230&fw_sig_locale=en-US&fw_sig_is_admin=0&fw_sig_social=1&fw_sig_site=41924925&fw_sig_url=http://www.hfme.org/&fw_sig_access_token=98b4e7e54a94444bc0b411a043ac225e2f0babd5&fw_sig_session_key=d91dd393c0833c0c533841286563854445977480a435fc471d25679fbb47e5ab-41924925&fw_sig_premium=1&fw_sig=549704cae09d93e2b0617001aba3944a&fw_sig_permissions=none&fw_sig_permission_level=0&fb_sig_network=fw#1011

Thanks for this. I have seen this before. However the NHS don't offer these types of testing and I presume you have to have these privately. I am not sure where. I've never heard of anyone having them done. I know of one guy from my clinic who had a brain scan done privately at a cost of £250 which showed his hypothalamus was enlarged ( back to the theory of the hpa axis malfunction maybe?) but that was all as far as I know. The problem is until these tests are more easily available we don't really know what we've got do we?

 

[anniekim]

[restorative exercise (if it's right for you I hasten to add)/QUOTE]

This is what is key to me, what is restorative exercise for ICC defined ME? People like Toby Morrison and the NHS guidelines do not acknowledge work that shows the energy metabolism in ME is dysfunctional - as patients know living with this illness as they experience it 24/7 - and there is an individual glass ceiling of how much activity patient can do before they must stop and not do damage. See Professor Van Ness on this, he has done some great work.

And until they do their advice when to do restorative exercise is hit and miss which is not acceptable as the misses could cause permanent deterioration as has happened to too many patients. Morrison's website seemed to say gradual activity brought him to full recovery, as someone said either he was going through spontaneous remission or he did not have the energy dysfunction that classic ME has. In his website he talks about doing a lot of sport before getting ill, athletic overtraining syndrome springs to mind as a possibility......His approach will not bring full recovery for those with energy metabolism dysfunction. And likewise the NHS guidelines and NHS clinics still seem, if not explicitly, to suggest very careful graded activity could bring full recovery, it's false hope

 

[Sharon1402]

People keep mentioning about "Classic ME" or "real ME". Isn't this website called "Phoenix Rising - supporting people with Chronic Fatigue syndrome (ME/CFS)? Toby helps people with Chronic Fatigue syndrome (ME/CFS) and for some restorative exercise helps. He says only do it if you don't feel worse. As do my clinic. As I've said before I am not promoting or working for him but for many people around the world they have no support, no guidance. They don't understand "boom and bust" pacing or how nutrition helps. Toby has helped them get that straight and so progress. For those of us who already get it then his program probably isn't right for you but there are many out there who have no one else to help and he's been a godsend. The clients doing his program have our own private forum where we support each other, share successes and information so I see what he has and is doing to help.
Now I really don't want to get into this any more as I have no doubt I will be accused yet again of working for him and having some ulterior agenda! I'm a bank manager in real life or was til this illness got me!

 

[anniekim]

Quite simply because as is acknowledged CFS/ME Is the umbrella term for many conditions, of which ME is one, I think ICC criteria clearly describe ME. I went to Leeds clinic many years ago, some advice on pacing was okay, I was moderate then, I have been bedridden 24/seven now for two years, 16 years on. My mum has ME too, she thankfully never deteriorated to severe and remains mild-to-moderate. We didn't do anything different, pacing helps her to manage, she is not fully well but has a reasonable quality of life, thankfully. Pacing didn't prevent deterioration for me.

 

[Sharon1402]

Quite simply because as is acknowledged CFS/ME Is the umbrella term for many conditions, of which ME is one, I think ICC criteria clearly describe ME. I went to Leeds clinic many years ago, some advice on pacing was okay, I was moderate then, I have been bedridden 24/seven now for two years, 16 years on. My mum has ME too, she thankfully never deteriorated to severe and remains mild-to-moderate. We didn't do anything different, pacing helps her to manage, she is not fully well but has a reasonable quality of life, thankfully. Pacing didn't prevent deterioration for me.

Didn't I just say all this in previous posts - umbrella term. Doesn't work for some but does for others etc etc. sorry not meant to be rude just don't want to go round that loop again. I attend the Leeds clinic now and find their advice so far is helping me thankfully. I also do voluntary work with them running and facilitating open days for new service users as well as workshops on improving the service. I was in one just last week.

 

[undcvr]

'apparent real recoveries' is an oxymoron - its like when i tell pple i accidentally on-purpose run into them

 

[ukxmrv]

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.

Hi Sharon,

You might not know that ME patients (that is those of us who were diagnosed by ME doctors whilst we still had some) have been fighting the NHS and the UK doctors who have tried to impose the ME=CFS regime since they first started the idea.

You may also not know that 2 ME patients took NICE to the High Court to try and overturn the NICE guideline. The ME Association branded the NICE guideline " not fit for purpose". It's the guideline that some NHS clinics that only offer lifestyle advice, CBT and GET/Activity management use as their excuse for not offering proper testing and treatment.

You may also not know that before the NICE guideline was introduced and before the clinics were set up there were some ME and CFS doctors who used experimental means to treat patients i.e. with immune modulators and antiviral drugs and other treatments used by some USA doctors to treat patients now.

As an example Standford Medical School in the USA released this video on the work of Dr Montoya who uses viral testing and treatment on his patients. This is the type of treatment that some ME and CFS patients would like to see in UK clinics

I am one of the very lucky ME patients who does repond to this type of approach but the NHS clinics will not treat me.

There is a long history of ME in the UK and it may be that you just don't know about this and why there is such hostility towards the new clinics.

Therefore when you champion a clinic or their approach I wonder why you would do this when so much harm and neglect is occurring to ME patients like myself because they will simply not treat us with methods we could get before and helped us. I am assuming that you simply don't know about this and appreciate the chance to have a dialogue and tell my side of the story.

 

[Scarecrow]

'apparent real recoveries' is an oxymoron - its like when i tell pple i accidentally on-purpose run into them

I hope you don't give the impression you're stalking them!

 

[katemoore75]

I've been doing some CFS research this past week and I found this forum which has been a huge comfort to find other people going through the same thing as me. But I found something else too, that has given me the first real hope I've had in a long time so I just had to share it here.

I have a feeling it's not quite what people around here are looking for so it may not be well received, but considering how much I wish I found it years ago, I thought I'd share it anyway, just in case it helps someone.

There is a guy in Australia named Toby Morrison who recovered from CFS and started a health center specifically to help other people recover too. They have many testimonials, including video ones.

He has a different approach than the other treatment threads around here but I hope some people could be open to it. I think it's a more realistic and self-empowering approach. Instead of looking for a magic pill or supplement combination it's a holistic method of getting to the root of health and recovery, including the mental component. I've never heard of anyone actually recovering from some combination of pills or strange treatment. And I know personally the biggest recovery periods I've had have been following along the lines of what he is talking about. I do think the body has the capacity to heal itself if we give it the opportunity.

An intro video about him: http://www.cfshealth.com/about-toby-morrison/
His story: http://tobymorrisonhealth.com/about/

His other videos: https://www.youtube.com/user/TobyTVCFS/videos

I know a lot of people here are really focused on little details like specific nutrient levels, symptoms and medications and are still looking for that magic cure. But personally that approach never really got me anywhere and I still haven't seen a solid example of it working for anyone.

For some reason I'm expecting negative replies from people who are not looking for this kind of approach, but I just have to post this anyway in case it inspires or helps someone else too.

It's a shame people are so negative about this programme - I've had ME for 20 years now and I've been in the outer circle for about 18 months. It's free to be in the outer circle and you get loads of emails and videos which have helped me so much. I've gone from being in a flare almost constantly with a couple of okay days here and there to feeling really well for weeks at a time with the occasional flare lasting a couple of days. My good days are so much better than they were and my flares are not only shorter but much less severe. I've learned to stop pushing myself and rest when I need to, which means there's still a lot I cannot do. I'm going to sign up because I want to get well enough to be able to live a full life. I have confidence in the programme because I have already seen results. This is how the programme works - try before you buy kind of thing so really no-one has anything to lose and everything to gain. I'd gladly pay for the help I've already had and it's cost me nothing.

 

[barbc56]

@katemoore75

First, wecome to Phoenix Rising!

If you read this thread you will see why people are skeptical which is very different than being negative.

As the late Carl Sagan said, "Extrordinary claims call for extraordinary evidence." At best, the evidence for these types of therapies is dismal and this approach doesn't work as a cure, especially in the long term.

I want to get well enough to be able to live a full life. I have confidence in the programme because I have already seen results. This is how the programme works - try before you buy kind of thing so really no-one has anything to lose and everything to gain

.

No disrespect and you may not mean this but the above comment implies that the rest of us either don't want to get well or haven't tried these approaches.


But even more important is the fact that when someone comes on the forum, and their first post is about a miracle cure and all subsequent ones are only on that thread , it's only natural to be suspecious.

This has happened so many times on PR. The clinic certainly isn't free.

It's always uplifting to hear someone is feeling better.

But to be perfectly honest, it disgusts me when others profit because of our illness.

Please understand, I really don't mean to be disrespectful but am explaining why this thread may appear negative to you.

To quote @minkeygirl

One person feeling better does not a cure make, especially for this of us who can specifically point to an infection as the onset of their illness. If I could "think" this away I would have done it 20 years ago

.

Thank you minkeygirl.

Barb

 

[jeff_w]

@barbc56 - I wish there were a "Love This" button for your post here.

@katemoore75 - I agree with everything Barb wrote.

 

[barbc56]

Thanks @jeff_w

Barb

 

[barbc56]

One thing I forgot.

Approaches such as therapy as an adjunct treatment can be helpful. Especially the kind I got, by a nurse who worked with chronic health conditions for years and went back to school to become a therapist. It was not CBT and I was never told by her this is all in my head! In other words not a cookie cutter approach like CBT.

My therapy involved helping me process this illness and it's impact on my life as well as individual helpful strategies for coping with my illness that may or may not apply to others. It was about six weeks of weekly therapy followed by occasionally seeing her as needed. It was never meant as a cure.

Unfortunately, she retired.

Barb

 

[Sea]

It's a shame people are so negative about this programme

Why does disagreeing (with good reason and evidence to do so) with a treatment always bring the accusation of being negative?

 

[SOC]

Why does disagreeing (with good reason and evidence to do so) with a treatment always bring the accusation of being negative?

Because too many people think that disagreeing with them automatically makes you a bad (negative, evil, stupid) person. Because if you are right, they might be wrong and that can't be possible, so you must just be irrationally negative. Apparently good reasons and evidence don't factor into pure belief systems.

 

[Valentijn]

It's a shame people are so negative about this programme - I've had ME for 20 years now and I've been in the outer circle for about 18 months. It's free to be in the outer circle and you get loads of emails and videos which have helped me so much.

Sounds like a cult. Might be nice for some, but not really my thing.

 

[ukxmrv]

I'm really glad that you have seen results and have confidence in the program. The information should really just be free though. If I was well again and had the answer I wouldn't be charging money for it.

There are plenty of PWME and family campaigning, organising conferences, making videos, running support groups, helping less fortunate patients and all for free. They don't expect to make a living off the sick.

 

[AndyPandy]

As far as I know, there are a number of not for profit ME/CFS societies in Australia that offer support groups and short courses in person and on line that cover practical and psychological strategies for coping with the illness, including pacing etc.

These are available at no or low cost/reasonable fees.

There are also Facebook groups associated with some of these societies.

So there are other affordable options for ME/CFS sufferers in Australia who might be looking for something in addition to specialist medical care.

Best wishes, Andy

 

[Hutan]

I'm in Melbourne and I looked in to Toby Morrison a while back. My conclusion was in line with many here - it's a 'think you are well - and you are!!!' approach together with basic healthy living and pacing skills.

There is a video somewhere with Toby talking about a young UK woman who travelled out to Australia to do a course with him. There were pictures of her surfing with Toby in the sunshine. I found it a bit creepy but it probably wasn't - I think he believes he is genuinely helping. I'd be watching out for a saviour complex though.

Regarding the earlier reference to Victoria ME/CFS society - it's called Emerge now and it is a reputable not-for -profit society serving people with ME/CFS and fibromyalgia in number of Australian states. You'll find plenty of free resources on their website.

emerge.org.au

Membership is something like $40 per annum. They put on a useful conference last year, have volunteers manning a helpline and can put you in touch with local patient support groups and providers of free or low cost courses.

 

[Hutan]

Sadly I couldn't find the video of the surfing ME/CFS patient - but here's Toby himself fresh from the waves.

You've got to laugh... And, in Toby's words, 'if you come from a place of love', well, anything is possible.