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My recovery from Chronic Fatigue and Autonomic Disregulation

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Sea

Senior Member
Messages
1,286
Location
NSW Australia
Sad to see the slamming of Phoenix Rising on the blog. Not nice to make accusations and refuse to discuss them. Phoenix Rising is not an entity, it is many people with a wide range of views.

Personally I don't think I've heard anyone say that recovery isn't possible, only that there is no cure. There is a difference.
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
For me personally, I don't feel there is any stress component to my ME/CFS, and thus have little inclination to try out one of these psychological therapies like the Lightning Process, etc (though I could be wrong, and maybe there is hidden stress deep in my mind that I am unaware of).

However it seems to me that these stories of psychological therapy-induced recovery do appear from time to time, and it suggests that in a small minority of patients, de-stressing may be the key to improved health.

But don't let us pretend that this is the answer for the majority of us. And I certainly don't think CBT will help either, as this is not a de-stressing therapy.

Yes, which is exactly what I made to clarify in my post. de stressing therapies are useful for anybody and can help a lot of things, but that certainly doesn't mean it will cure everyone's health issues either. That is just applying common sense.
 

digital dog

Senior Member
Messages
646
I have done the Lightning Process, Guptas amygdala training, DBR,CBT, NLP, and many many other treatments that are meant to improve your health.
I gave 100% to these as they cost me a lot of money and I was very sick.
I can officially report that they did JACK SHIT but I still think they are worth a try.
I know some people who got MUCH better using these processes.
Just not me...
 

Martial

Senior Member
Messages
1,409
Location
Ventura, CA
I have done the Lightning Process, Guptas amygdala training, DBR,CBT, NLP, and many many other treatments that are meant to improve your health.
I gave 100% to these as they cost me a lot of money and I was very sick.
I can officially report that they did JACK SHIT but I still think they are worth a try.
I know some people who got MUCH better using these processes.
Just not me...

That is one of my biggest gripes with any alternative treatment, it should always be cheap and easily affordable. Especially because alternative medicine practice should place the well being and health of others prior then trying to capitalize on revenue streams, I mean they always talk about how big pharma is the one scamming all of these people, or over charging after all. From what I have seen of the lighting process as well as other things like EFT it is at least easily affordable if you just take the concepts and tools from the books and apply it to yourself.
 

digital dog

Senior Member
Messages
646
Yes, it is so bloody expensive and you are sworn to secrecy about how it is done.
I wish people who got well would post EXACTLY what they had to do. I think they are worried they may be taken out if they do!
I can't bear to return to the Lightning Process so I'm not going to put it out there but those that got well should post some things on the net so that other people can give it a go.
They all say that if that happened people wouldnt be doing it right but that is BS. It's not exactly rocket science although it is REALLY taxing..
 

A.B.

Senior Member
Messages
3,780
I'm curious if the effect will last, say another year or so. If it does, that would be much more convincing than calling five months of remission a complete recovery.
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
Where was PR slammed in the blog?
Throughout her story she basically says that following Phoenix Rising kept her from trying the therapy that would cure her. Also there is the accusation that Phoenix Rising attacks people who post recovery stories.

Now, because I know what happens when anyone suggests that Chronic Fatigue can be cured at all, much less cured by something that isn’t exclusively focused on physical systems (the standard dismissal is that the person never had chronic fatigue in the first place, because there is no way that mental processes can be causing it), here is the Longer Version, to assure you that I did indeed have chronic fatigue syndrome and that I tried very hard to get better with various approaches considered valid by the chronic fatigue community that I found at Phoenix Rising’s discussion boards (you can read the evolution of my illness there by searching my posts. I registered under the name Sueami):

...At a loss for any other solution, I followed some advice from a poster on Phoenix Rising who speculated that extreme rest might allow the mitochondrial energy production systems to renew and rebuild...

...I had significant autonomic disregulation... and the word from various CFS sufferers on Phoenix Rising was that we needed to keep our heart rates below anaerobic levels or we would further damage the mitochondria

...The advice was also to limit mental activity as well, as too much talking or thinking could cause some people to crash as well...

...I laid flat on my back for the next three weeks...Panic attacks became increasingly frequent, and I deeply regretted not having gone to see a Chronic Fatigue specialist while I was still well enough to travel...

...I could search up chronic fatigue recovery stories episodically on the kindle. I began finding a number of stories in which people had recovered fully and completely, something that was deemed impossible at Phoenix Rising...

...Some people had recovered by throwing themselves into yoga, one young woman had left a career she disliked and following a childhood dream and found a full recovery, and a number of people had posted on youtube and on blogs about recovering via Reverse Therapy, which I had read about the previous summer. At the time, I had asked about it on Phoenix Rising’s discussion boards...

...Reverse Therapy, Mickel’s Therapy and any other process (such as yoga or a mysterious treatment called Lightning Process) by which some individuals had recovered completely from CFS were thoroughly derided and dismissed by longtime CFS sufferers at Phoenix Rising, who felt they were either scams or trying to portray chronic fatigue as entirely a mental problem. People who testified that they had recovered fully were deemed never to have truly had chronic fatigue by the most vocal posters at Phoenix Rising, who were the only people I knew who had chronic fatigue, so I took their word for it. If only I had tried Reverse Therapy when I first ran across it, I could have saved myself almost an entire year of suffering, but we are ready to try something only when we are ready, and I was more willing to take the word of strangers on the Internet that something wouldn’t work than believe the testimonials of other strangers that it had indeed worked for them...

...I deeply regret losing those months of my life and descending into sheer hell before I was ill enough to see beyond the scathing criticisms of Reverse Therapy on Phoenix Rising...

...For now, I am not enabling comments on this blog. I have no desire to argue with other CFS suffers about whether I had chronic fatigue or whether I really recovered. My first posts at Phoenix Rising about my recovery taught me what response I might expect...
 

GhostGum

Senior Member
Messages
316
Location
Vic, AU
I wrote a fairly extensive post regarding this subject here I thought I would share,

http://forums.phoenixrising.me/inde...g-addressing-the-ans.40076/page-2#post-646942

I think it is all a bit of a catch 22, there are aspects of us that get ravaged by this condition and at some point this type of treatment could be incredibly beneficial and relevant, while on the other hand if the triggers of some's onsets are still present and systems still in total disorder it will do absolutely nothing.

As I state in that post, hypnotherapy has helped me a lot, and now I have been throwing in the Wim Hof method and looking at Tummo for good measure (it fascinates me that Wim Hof has shown with science that this ancient art is no trick, and that most have no clue their ability to connect with their physiology). But it is all off the back of a decade+ of work, to get me to a state of recovery where the time and place came to take a look at other aspects of myself. I do have to say the very anti anything psychology that pervades parts of this community was quite detrimental in my initial treatment, it lead me to second guess and be overly defensive trying to participate, but I also see this as a personal choice I took at some point, and still is one in the mass of questionable 'science' around psychiatry and psychology. It is also fully understandable due to the long saga of the King's College nonsense, which was a disgrace, but you can just end up throwing the baby out with the bath water.

^I am not sure picking apart the messenger is very helpful neither. Maybe she has made some bad generalisations about the forum due to bad experiences, not expressed her story perfectly; none of it changes the crux of her experience. There is just no avoiding that people who fit the ME diagnosis can find great benefit with such treatments, at certain points of their journey, I was CCC for 10 years and a total write off.

Life is just complicated, life + ME, very much so.
 

digital dog

Senior Member
Messages
646
I think it is worth a try. I have seen people go from wheelchair bound to working full time after the Lightning Process.
I think that flooding your body with feel good hormones CAN cause a cascade of positive reactions in the body and MAY get things going again for SOME people.
I think that everyone who can get to the sessions (believe me everyone that was on my course DID NOT have ME as they were taking walks by the sea at breaks) should give it a go.
It's silly to slam LP for milder cases unless you have given it a REALLY good go.
For me, it does not matter whether I am being positive or negative or whether wonderful or dreadful things are happening in my life, as my illness has a mind of its own.
That being said I like to try and think positively if my body plays ball and i'd really like some wonderful things to actually happen in my life!!!
 

ScottTriGuy

Stop the harm. Start the research and treatment.
Messages
1,402
Location
Toronto, Canada
For me personally, I don't feel there is any stress component to my ME/CFS, and thus have little inclination to try out one of these psychological therapies like the Lightning Process, etc (though I could be wrong, and maybe there is hidden stress deep in my mind that I am unaware of).

However it seems to me that these stories of psychological therapy-induced recovery do appear from time to time, and it suggests that in a small minority of patients, de-stressing may be the key to improved health.

But don't let us pretend that this is the answer for the majority of us. And I certainly don't think CBT will help either, as this is not a de-stressing therapy.

x2

And would go one step further and suggest that CBT can be harmful to our patient population - essentially 'training' the patient to ignore their symptoms which can instigate exacerbation of illness severity - from which they may never recover.
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Why would "Pheonix Rising" be interested in the treatment or recovery of "Chronic Fatigue and Autonomic Dysregulation"?

This is a forum for people with CFS and ME

The advice we give and the experience we share is based on your own experience and research on these conditions. We don't pretend to know about a general chronic fatigue or severe anxiety etc.

If someone gets advice to rest and it doesn't help then maybe it is a red flag that they are in the wrong place. It's the same with every other disease. People wander into internet forums thinking that they may share a disease and then realise that they are different.

We can't stop people wandering into this forum and then being disappointed because they are not the same. There needs to be some personal responsibility as well.

About Phoenix Rising
JULY 30, 2015
Phoenix Rising – An NEID Corporation is a certified 501 (c) 3 non-profit corporation (EIN# 27-3313361).

Phoenix Rising provides people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) information to support their health and well-being. We publish articles and a newsletter, maintain the largest ME/CFS forum in the world, and have the biggest database of information about ME/CFS on the web.
 

SOC

Senior Member
Messages
7,849
Mental health treatments -- CBT, Mickel Therapy, Lightning Process, Reverse Therapy, etc, etc, etc -- may very well work for mental health issues. That's what they're designed to treat, after all. I don't think the argument is that mental health treatments don't help some people diagnosed (likely by non-experts) with chronic fatigue or Chronic Fatigue Syndrome. If the illness is entirely a mental health issue, then full recovery may even be possible. If there is a mental health issue (secondary, not causal) along side a physical issue, which is possible with any chronic illness, the patient may feel somewhat better after mental health treatment.

The argument is that mental health treatments do not cure organic illnesses. That's no mystery. It's not a difficult concept. Suggest to your doctor that you would rather be cured of cancer or diabetes or a viral illness using only a mental health treatment. Suggest to your naturopath that you don't want any medicines, supplements, accupuncture, or anything physical to treat those conditions because you'd rather do it all by changing the way you think about your life and your illness. I doubt you're going to get much agreement. While they would happily advise mental health treatment for mental health problems, they full well understand that mental health treatment does not cure organic illness.

It's all about the appropriate tool for the job. Mental health treatments treat mental health conditions. If they cure you, then you had a mental health condition. Nothing wrong with having a mental health condition. Be glad you didn't have a pathogen ravaging your body, or a genetic condition that caused serious damage, and go on with your new happy healthy life. Just don't get all self-righteous on people who ended up with an organic illness instead of a mental health illness because your mental health treatment can't cure their organic illness.
 

SOC

Senior Member
Messages
7,849
Sad to see members that don't feel comfortable anymore with this forum.
Being uncomfortable is no excuse for the public slamming of a large group with a wide variety of views.

It's bad enough when it comes from non-members, but when it comes from someone who claims to be one of us, who comes here and acts like a helpful friend but then goes bad-mouthing us behind our backs.... I really don't know what to think.
 
Messages
22
Location
Kent, England
I am new to this site, but have also posted for some time on another much smaller site. They have a strick policy prohibiting such politics regarding the judging of other posters diagnoses, as in whether somone really has CFS or ME and if their diagnoses was carried out by a reputable source or a guy running a clinic from the back of a van.
With an illness that has no biological test, I beleve no one can or should be making statements to the legitimacy of another persons illness.
I have had CBT, and would never try to claim it treats any root cores of CFS and ME, I didn't go into it thinking that it would, and had a long chat with the therapist before hand, telling them that all I was looking to gain from it was to help me better except and cope with the emotional stresses of living with a long term illness.
I told him that if I felt like there was an underlining opinion that it was all in my head, and that through this process alone could cure all my symptoms, I would have just upped and left.
It fact after having done all this I have been worse that ever before in ten years, but I have much better control over my emotions, and that's what I gained from it all.
I would agree its no cure, and for sure its earned a bad name through therapist claiming it as a cure all and this would point to them believeing the illnesses to be all in the mind. That I strongly disagree with.
 
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Tammy

Senior Member
Messages
2,176
Location
New Mexico
I am new to this site, but have also posted for some time on another much smaller site. They have a strick policy prohibiting such politics regarding the judging of other posters diagnoses, as in whether somone really has CFS or ME and if their diagnoses was carried out by a reputable source or a guy running a clinic from the back from of a van.
With an illness that has no biological test, I beleve no one can or should be making statements to the legitimacy of another persons illness.
I agree wholeheartedly. We get enough of that on the outside.
 

Tammy

Senior Member
Messages
2,176
Location
New Mexico
It's bad enough when it comes from non-members, but when it comes from someone who claims to be one of us, who comes here and acts like a helpful friend but then goes bad-mouthing us behind our backs.... I really don't know what to think.
hmmmmmmmmmmmmm................isn't that like calling the kettle black.? Also....IF you read her blog.........I don't think you would be DIAGNOSING her as just having a mental health problem............you have absolutely no authority or right to do that in my opinion.
 
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Mij

Messages
2,353
"Much research goes into M.E. This involves looking for viral clues or other infective causes. Some of the most commonly suggested causes are that M.E is due to an unknown virus, Borrelia or Lyme’s Disease, Epstein Barr infection (Glandular Fever), adrenal ‘burnout’ or Candida. Mickel Therapy has consistently treated successfully many cases of M.E who were given the above as causes. This suggests that they are incorrect and further study of such pathogens is a waste of resources. Please note that Mickel Therapy’s results are based on client testimony and have not yet been backed up by research. The latter is in place and results will be disseminated when the study is complete."

This is written on the mickey therapy website They base their successes on testimonials. :confused:
 

sillysocks84

Senior Member
Messages
445
Everybody's cause and everybody's mode of recovery could vary. Maybe for some it is making sure to be calm in the storm so the sns can switch back over to the normal more efficient mode. Her illness was nor long so maybe this is why it worked relatively fast for her. Maybe it was able to put a stop to whatever else was occurring in the body that was cfs related. I obviously don't have the answers here. But I choose to believe at this time this could be just as likely as taking rtx which for all we know isn't long term cure and could actually go on to cause bronchiolitis obliterans or some other orphan disease. Key word orphan and rare. We all have to do what we feel is needed. I will choose to be positive. It's all I have and I believe I can beat this. I am also happy to hear @SOC daughter is doing well and hope it continues for her! I love hearing people crawling out of this pit.
 
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