Has anyone been completely cured of CFS?

[ukxmrv]

It's a problem in the UK because most patients here don't have any lab tests that show any abnormalities. So when they get a often very poor diagnosis from one of the terrible CFS clinics here then they accept it and don't even know that there are tests being done on patients abroad showing abnormalities.

Some of us pay for private testing and see doctors abroad for treatment or through Skype or the internet. Some have no private testing and go to Lightning Process courses or similar.

The two groups don't tend to mix or overlap.

So the people who do get a benefit from the LP don't have any tests that show abnormalities. We never know if they would have ever shown any.

Why they don't have tests I never know. When I have directly asked people they say "I didn't know they existed" or "I thought that stress was causing my symptoms" etc.

It would be simple for the sellers of the LP to find some people who do have tests and then offer them free courses and free testing after but they never bother to do this.

 

[Dster]

And if you went to a cancer forum, and peddled LP as the "cure" for it, you'd get a lot of extremely offended responses. We're offended for the same reason. We have a chronic (biologic) neurological disease which involves various objectively documented biological abnormalities which cannot result from thought processes or inactivity.

Please try to imagine how hurtful it would be for a cancer patient to be told that they can be cured if they want to badly enough, with a three-day course. And with the message that if they fail to be cured, it's because they weren't trying hard enough. You and LP are making us feel that way, and you don't seem to care.

We have infections verified by blood tests. We have chronic inflammation verified by blood tests. We have a unique biological disability verified by a two-day CPET. Unless you can objectively verify that you had these problems before LP, and lack them after LP, we are really not going to be interested. Your subjective self-report of your illness and the "cure" are one small step above "completely useless" as persuasive evidence.

We're happy to respect that you feel better after LP. But we're not willing to close our eyes to the scientific evidence, our objective lab results, or our own subjective experiences, and blindly believe that changing our thinking will cure our disease.

My wife’s breast cancer was initiated by a severe psychological shock. Following diagnosis she received chemotherapy, radiotherapy and surgery. She was also advised by her oncologist on how to approach the cancer psychologically, since the literature shows that those with a certain mental attitude had better outcomes. So a physical illness was initiated by negative psychology, treated by non-psychological interventions, aided and abetted by positive psychology

ME/CFS literature suggests that more women than men are affected and that it is more prevalent in certain personality types; suggesting psychology is involved at some level (it’s difficult to see how physical differences could cause such variation). Is it not even remotely possible then that a “psychological” training program could help/augment other treatments of even the worst cases of ME/CFS and cure the less extreme cases? My view from personal experience is that it can, and that people visiting this site should know about it

 

[Valentijn]

My wife’s breast cancer was initiated by a severe psychological shock.

No, cancer is a biological disorder with biological triggers. The causation has no psychological components.

. . . the literature shows that those with a certain mental attitude had better outcomes.

Those studies (one or two) have been contradicted by many other studies, if not invalidated outright.

ME/CFS literature suggests that more women than men are affected

Sex is biology, not psychology. Most autoimmune diseases favor one sex over the other. This does not implicate a psychological component.

and that it is more prevalent in certain personality types

Again, these studies are contradicted by studies employing a more rigorous methodology. And they are woefully outdated.

But thank you for clarifying that you believe cancer is a largely psychological disorder. It helps us to understand that your problem is far more extensive than your misguided views about ME. So I guess we shouldn't take it personally.

 

[A.B.]

My wife’s breast cancer was initiated by a severe psychological shock.

You don't know that. That's just your interpretation of a temporal correlation between the cancer being recognized and the psychological shock.

Following diagnosis she received chemotherapy, radiotherapy and surgery. She was also advised by her oncologist on how to approach the cancer psychologically, since the literature shows that those with a certain mental attitude had better outcomes.

Which literature? I seriously doubt that there's any credible evidence that positive attitudes lead to longer survival time in cancer.

ME/CFS literature suggests that more women than men are affected and that it is more prevalent in certain personality types; suggesting psychology is involved at some level (it’s difficult to see how physical differences could cause such variation).

Women and men are biologically different. A correlation between personality types means nothing. It should be expected that severe illness will affect personality.

I think you could learn a lot by reading some older research on supposedly psychosomatic illnesses. People were not afraid to proclaim illnesses as psychosomatic with near certainty, just because they had no better explanation. And they saw a lot of flaws in patients too, which they were seen as causative. Today this is seen as nonsense, but there are still a few poorly understood illnesses where this pseudoscience continues.

Is it not even remotely possible then that a “psychological” training program could help/augment other treatments of even the worst cases of ME/CFS and cure the less extreme cases? My view from personal experience is that it can, and that people visiting this site should know about it

Yes, the right psychological intervention can be helpful. Interventions based on systematic denial of reality are harmful, and LP and certain forms of GET/CBT fall under this. In any case, claims of curing physical illness with positive thinking (for £650 I might add) are pure quackery targeting the vulnerable.

 

[Gingergrrl]

There is a vast difference in using psychological and supportive treatments to augment medical treatments of CFS versus claiming that these alone *cure* CFS.

If someone receives a diagnosis of HIV (with a blood test to prove it) then of course they can and should benefit from therapy and counseling to augment their treatment. However, no one in their right mind would say that therapy alone would cure their HIV.

CFS is absolutely no different.

 

[Adlyfrost]

If I had the energy I would infiltrate two groups 1. White supremacists 2. lightening process . Then write a book to expose them.

Cults can generate remarkable, though temporary results, and fast. But at what cost?

I have gotten emotional highs / endorphins that kept me going for months out of pain, though I did experience extreme narcolepsy during that time-sleeping uncontrollably for several days. And a horrendous viral crash when I moved to a cold climate.

 

[Dster]

If I had the energy I would infiltrate two groups 1. White supremacists 2. lightening process . Then write a book to expose them.

Cults can generate remarkable, though temporary results, and fast. But at what cost?

I have gotten emotional highs / endorphins that kept me going for months out of pain, though I did experience extreme narcolepsy during that time-sleeping uncontrollably for several days. And a horrendous viral crash when I moved to a cold climate.

If you did the lightening (sic) process, then you might well have the energy. And you expose would merely show that many people who go through the proces are cured of whatever it was they were suffering from in the first place - I know I was. To describe the lightning process as a cult shows complete ignorance of the process itself, its practitioners and the many people whose lives have been transformed by it. Your criticism seems closely connected to the same old myths trotted out on this forum by those with zero knowledge (and zero interest in gaining knowledge) of the process.

 

[Adlyfrost]

@Dster : I understand the LP is a way to retrain the nervous system out of fight or flight and into rest and digest, to put it simply. I love the concept. I use music to do this at home and other hobbies. Very healing!

I believe it is a cult though because of the peer pressure and brainwashing (pressuring people say they are feeling better when they are not). That robs a sense of psychological autonomy from a person. It also can be life-changing so much that you get a group of loyal devotees who cling to it out of gratitude and go on with an evangelical-like missionary zeal to convert people. That says to me- cult-like!

 

[Tired of being sick]

Cure no
Remission yes

 

[Dster]

You might well be describing the attributes of a cult, but it doesn't describe my behaviour, although I am indeed someone who has benefited from the lightning process. I did the course with one other person and there was zero peer pressure to do anything. It has been life changing but I haven't felt the need to convert people (convert them to what?) - the only reason I risk ridicule and abuse on this site is in the hope that if someone suffering as I was happens across it they at least might get the other side of the LP story, rather than being immediately put off by the lies and myths promulgated here. As for psychological autonomy, if you really knew what the course entailed, you would know that there is nothing in it that could ever rob anyone of anything. Apart from the £650 it cost, of course ;-)

 

[Dster]

Cure no
Remission yes

We don't know either way for sure. I say cure because my colleague has not had a relapse now since July 2013, and I haven't since January this year. We both feel "cured".

 

[Snowdrop]

@Dster

It shouldn't be surprising to you that there are people here who are suspicious of LP and it's supporters.
People who come to this forum supporting the LP process generally have not posted about their illness.
What there symptoms were, how long they were ill and what other things they may have tried.
They only show up after being cured and only post about how the LP process is the cure.

How do you expect us to assess this treatment without any prior interaction with you regarding your experience of ME?
You only joined the forums recently and only to engage with LP discussions.
Are you aware of how very ill many people are? Do you know the ICC/CCC guidelines for ME?
How familiar are you with the illness that all of us posting here experience?
I would also like to ask you: are there illnesses for which LP is inappropriate?

 

[Adlyfrost]

@Dster : I think Snowdrop poses some very fair questions. Perhaps I am ignorant. Anxiously awaiting your response. Will read it with an open mind, promise!

 

[Bob]

If you did the lightening (sic) process, then you might well have the energy. And you expose would merely show that many people who go through the proces are cured of whatever it was they were suffering from in the first place - I know I was. To describe the lightning process as a cult shows complete ignorance of the process itself, its practitioners and the many people whose lives have been transformed by it. Your criticism seems closely connected to the same old myths trotted out on this forum by those with zero knowledge (and zero interest in gaining knowledge) of the process.

I think you'll find that many people on this forum are well informed about the Lightning Process.
The Lightning Process, and other psychological approaches, cannot cure biomedical illnesses. Simple as that. The Lightning Process can cure ME no more than it can cure cancer. Many patients in general (with various illnesses) might benefit from psychological interventions, in terms of feeling some psychological benefit at least in the short term. Some fatigued patients may well experience remission from psychological interventions. But it is not a cure for ME. The Lightning Process would actually be dangerous for me, because it trains an individual to ignore their symptoms. I need to be fully aware of the severity of my fluctuating symptoms so that I can avoid devastating relapses.

 

[Snowdrop]

@Dster
Also,
regarding the cult issue: you may not see it as a cult but from an outsiders view you seem to be a true believer.
You suggest that we believe you, take your word for it, that you are sure that this works.
You find us obstinate in our stubborn unwillingness to look at LP as a viable cure.
All you have offered so far is people need to know LP works because I say so.
You don't seem to have an open mind (conflicts with true belief) as to examining the possibility you are mistaken with regard to our illness.

The bit about your wife's breast cancer shows magical thinking since although she may have been diagnosed with cancer after her 'psychological shock' you can't possibly know that the cancer was not yet there before being diagnosed. Her cancer had probably/possibly been there for some time before diagnosis and the shock that you believe started it all.
Some things you have said also lead me to believe that you are reading misinformation about ME.
ME is a biological illness but it is also (sadly) at present a political illness the way HIV was in the past as well as Multiple Sclerosis, tuberculosis. It takes a while for proper science research to catch up after misinformation has been spread far and wide to the public.

If you really do care about the people here on this forum who are suffering (the purpose of your sharing LP with us)
then perhaps you might want to try and immerse yourself in the community and learn more about the illness.

 

[Dster]

I started visiting this site early/mid-2013 as someone diagnosed with CFS/ ME 2 years prior to this. Typical symptoms were PEF, swollen, glands, depression, agonising muscle pain, cognitive impairment. I had seen a long suffering, colleague cured of her CFS/ME by LP and in my web searches of the condition I became aware of the site and the negativity towards LP . I engaged in a fair amount of discussion around LP, and received a lot of abuse. The views expressed on this site very nearly put me off risking the £650 for the course. But in January this year I took the plunge and attended an LP course and I have been transformed. I attend a gym four times a week, play golf and have just returned from a walking holiday in Scotland, activities beyond me pre-LP.
Now, did I and my colleague have ME/CFS? If we did then LP helped us and can help others. If we were both misdiagnosed, then there will be others, similarly misdiagnosed, who can also be helped by LP. Either way I have a duty to visitors to this site to give a view opposed to the general consensus of this forum that LP is psychobabble hogwash, taught by charlatans and promoted but the prince of darkness himself, Phil Parker. This way at least they have an opportunity to see an alternative viewpoint, based on my experience. If members of this forum find this unpalatable that really is too bad.
To answer Snowdrops questions in order: I am very aware of how ill some of the members of this forum are - the colleague to which I refer spent most of her weekends in bed summoning what tiny amount of strength she could muster to try to sit at her desk for three hours a day, four days a week for 5-6 years. I won't bang on about her symptoms any further but she was dreadfully ill, and it was very very sad to watch - her pain, frustration, sadness and hopelessness was a terrible experience for her, her husband and kids and everyone who knew her. So don't you dare assume I don't know what this illness consists of - I've helped nurse this woman for six years and journeyed with her for every step I could and I now count her as one of my closest friends. And I also experienced with my own disbelieving eyes her appearance when she came back to work the day after LP. Bright eyes, colour in her face instead of grey and a spring in her step. And she's doing a marathon next month. Now I really don't care whether you think I've made up any of the stuff I've just written - your minds are closed already - but I'm an experimental physicist by training to PhD level so not particularly open to voodoo etc - again I say this to ensure that anyone new to the site and reading this understands that this isn't some weed smoking, tree hugging, slack brained half wit describing his latest acid trip but a rational, critical thinker with probably a much higher level of academic and professional achievement than most who post here
I am aware of the guidelines
I'm very familiar with the illness people on this forum experience, see above
There are many illnesses LP is inappropriate for - cancer, heart disease, a broken arm, etc etc

 

[MeSci]

We don't know either way for sure. I say cure because my colleague has not had a relapse now since July 2013, and I haven't since January this year. We both feel "cured".

Sadly it is common for relapses to come a year or more after remissions.

 

[MeSci]

I started visiting this site early/mid-2013 as someone diagnosed with CFS/ ME 2 years prior to this. Typical symptoms were PEF, swollen, glands, depression, agonising muscle pain, cognitive impairment. I had seen a long suffering, colleague cured of her CFS/ME by LP and in my web searches of the condition I became aware of the site and the negativity towards LP . I engaged in a fair amount of discussion around LP, and received a lot of abuse. The views expressed on this site very nearly put me off risking the £650 for the course. But in January this year I took the plunge and attended an LP course and I have been transformed. I attend a gym four times a week, play golf and have just returned from a walking holiday in Scotland, activities beyond me pre-LP.
Now, did I and my colleague have ME/CFS? If we did then LP helped us and can help others. If we were both misdiagnosed, then there will be others, similarly misdiagnosed, who can also be helped by LP. Either way I have a duty to visitors to this site to give a view opposed to the general consensus of this forum that LP is psychobabble hogwash, taught by charlatans and promoted but the prince of darkness himself, Phil Parker. This way at least they have an opportunity to see an alternative viewpoint, based on my experience. If members of this forum find this unpalatable that really is too bad.
To answer Snowdrops questions in order: I am very aware of how ill some of the members of this forum are - the colleague to which I refer spent most of her weekends in bed summoning what tiny amount of strength she could muster to try to sit at her desk for three hours a day, four days a week for 5-6 years. I won't bang on about her symptoms any further but she was dreadfully ill, and it was very very sad to watch - her pain, frustration, sadness and hopelessness was a terrible experience for her, her husband and kids and everyone who knew her. So don't you dare assume I don't know what this illness consists of - I've helped nurse this woman for six years and journeyed with her for every step I could and I now count her as one of my closest friends. And I also experienced with my own disbelieving eyes her appearance when she came back to work the day after LP. Bright eyes, colour in her face instead of grey and a spring in her step. And she's doing a marathon next month. Now I really don't care whether you think I've made up any of the stuff I've just written - your minds are closed already - but I'm an experimental physicist by training to PhD level so not particularly open to voodoo etc - again I say this to ensure that anyone new to the site and reading this understands that this isn't some weed smoking, tree hugging, slack brained half wit describing his latest acid trip but a rational, critical thinker with probably a much higher level of academic and professional achievement than most who post here
I am aware of the guidelines
I'm very familiar with the illness people on this forum experience, see above
There are many illnesses LP is inappropriate for - cancer, heart disease, a broken arm, etc etc

If you do feel cured and have had genuine ME, it is highly advisable to avoid extreme exertion, as these will increase the risk of relapse.

I speak as a former weed-smoking, acid using, tree-hugging, tight-brained full-wit!

(and most of those are still true...and none of it stopped me from getting good scientific qualifications)

 

[chipmunk1]

in my opinion LP has all features of a cult.

the idea you can program your autonomous nervous system with words which only certain parts of the brain can process is nonsense. Our brain is far more complex than that. We can just re-program it with a few simple words or actions. it would be highly dangerous if you could actually re-program our brain that easily. What about vital functions? There is a reason that we can not control certain parts of our brain with our conscience.

Can i stand on paper shouting: "My heart does not beat, my heart does not beat"? Will it stop?

LP reminds me of faith healing or stage hypnosis and as always there is a simple down to earth explanation for observed "recoveries" that does not need to resort to mysticism.

 

[Bob]

I started visiting this site early/mid-2013 as someone diagnosed with CFS/ ME 2 years prior to this. Typical symptoms were PEF, swollen, glands, depression, agonising muscle pain, cognitive impairment. I had seen a long suffering, colleague cured of her CFS/ME by LP and in my web searches of the condition I became aware of the site and the negativity towards LP . I engaged in a fair amount of discussion around LP, and received a lot of abuse. The views expressed on this site very nearly put me off risking the £650 for the course. But in January this year I took the plunge and attended an LP course and I have been transformed. I attend a gym four times a week, play golf and have just returned from a walking holiday in Scotland, activities beyond me pre-LP.
Now, did I and my colleague have ME/CFS? If we did then LP helped us and can help others. If we were both misdiagnosed, then there will be others, similarly misdiagnosed, who can also be helped by LP. Either way I have a duty to visitors to this site to give a view opposed to the general consensus of this forum that LP is psychobabble hogwash, taught by charlatans and promoted but the prince of darkness himself, Phil Parker. This way at least they have an opportunity to see an alternative viewpoint, based on my experience. If members of this forum find this unpalatable that really is too bad.

I think you make some fair points. If I had responded well to the Lightning Process, then I would probably want to shout about it from the roof-tops.
You say that you were diagnosed with CFS/ME, and you responded well to the Lightning Process. That's a good news story, and everyone who hears it would wish that they were in a similar situation.

But in your enthusiasm for LP, i think you are failing to acknowledge or accept the reality of ME for many patients.
CFS/ME is highly heterogeneous, and what worked for you may be unhelpful and irrelevant for others, and even possibly dangerous for others.
For example (and I'm speculating here), you might have had a short-term post-infectious condition, leading to associated depressive symptoms, and perhaps these depressive symptoms resolved themselves because of the LP course.

However, that doesn't mean that LP would be helpful for most ME/CFS patients.
Also, of course, there is no medical evidence to support LP for ME patients.

If you were to acknowledge the following, then I think that would be helpful in terms of having a nuanced discussion about LP and its potential benefits and dangers:

1. A positive-thinking training course cannot cure a biomedical illness.
2. Ignoring all symptoms, as LP teaches, can potentially have a devastating impact on ME patients.