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Has anyone been completely cured of CFS?

Discussion in 'General ME/CFS Discussion' started by cosmo, Jul 19, 2013.

  1. Kina

    Kina Moderation Team Lead

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    @Dster

    The general consensus on this forum is indeed that 'LP is psychobabble hogwash'. I guess, using your own words, if you find this unpalatable that really is too bad. This thread is not about LP, it's supposed to be about whether or not anybody has been completely cured of ME/CFS. You answered the question from you own point of view and experience ages ago. The thread has been taken vastly off-topic and it's time to get back to answering the question which to me relates to remission versus complete cure.

    Thank you.
     
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  2. Bob

    Bob

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    But it is very similar to faith heading in that it does little more than instruct the patient to 'believe' that they are well. By believing that you are well, apparently you are cured. In essence, that is the process, so it's no surprise that it invokes deep scepticism.

    LP clearly helps some people who experience fatigue, but positive thinking cannot cure a biomedical illness. At least, there is no scientific evidence that it ever has done.

    Edit: @Kina, we crossed posts. Please feel free to delete any of my posts if they are off-topic.
     
    Last edited: Aug 29, 2014
  3. Kina

    Kina Moderation Team Lead

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    @Bob -- it's okay as it was posted as the same time I did. I suppose if people still want to discuss this, we could split the thread but I don't know how much more can be said because it's just going back and forth with the same stuff.

    Actually a new thread with a scientific discussion about why positive thinking can't cure a biomedical illness might be beneficial for those new to ME. Phoenix Rising and forums for AIDS, MS, Diabetes, Cancer etc wouldn't exist if positive thinking could cure biomedical illnesses. I am sure there are already many threads though that discuss this subject.
     
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  4. A.B.

    A.B. Senior Member

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    You still don't understand that ME/CFS is in many cases a physical illness with measurable abnormalities. Claiming that standing on a piece of paper, repeating "I don't do ME" will correct the underlying pathology is mysticism until proven otherwise.

    There are occasional claims of recovery with these approaches, but very little to suggest that this is anything but a misdiagnosis, temporary remission interpreted as cure, or just false claims to promote a particular approach.

    I'm serious. If it worked, the first person to demonstrate it would easily get the Nobel prize in medicine and revolutionize medicine. Has it happened? No, despite these claims going back to Freud's times. That alone should tell you something. We've been able to measure pathology objectively for a long time - why has nobody ever demonstrated that these mental approaches can indeed cure illness? Apologies if I simply don't believe a word of anything you say.
     
    Last edited: Aug 29, 2014
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  5. Tired of being sick

    Tired of being sick Senior Member

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    How were you cured?
     
  6. lansbergen

    lansbergen Senior Member

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    Well, when I was at my worst the automatic breating process did not work anymore. I had to do what you do not believe and claim nobody else does.
     
  7. SOC

    SOC Senior Member

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    So you don't believe that one can control automatic functions like the heart beat and breathing, but one can "absolutely" control other automatic functions of the body? What's the difference? Why can one control endocrine, nervous and immune systems just by thinking, but not the heart and lungs? Can I control my hormone levels by denying they are low? Can I increase low NK cell function or low CD8+ cell number by standing on a piece of paper denying they are low? If I have that much control of my body just by denying dysfunctions, why should I not be able to control something as simple as heart beat or breathing, which I can at least feel and hear?
    Yes, for people who have a psychological disorder (meaning a dysfunctional thought process, not a neurochemical disorder) which can be changed by changing the way one thinks about one's self and one's life. Denying symptoms only works if the symptoms don't actually exist.
     
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  8. Adlyfrost

    Adlyfrost Senior Member

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    There have been several posters on phoenix rising claimed to have been completely 'cured' of CFS/ME. Because their claim sounds so incredulous to those of us who have been suffering for decades (sometimes we think we are cured just to have symptoms return a year later), we have to pick them apart to verify the validity of their story, which I think is fair (as long as it is done in a civil manner).

    So @Dster, please don't feel singled out- you or your LP. Nothing is more detrimental to us than wasted time, money energy and hope. As for the others (and I may not be familiar with them all), I have found their stories and/or methods questionable. They have more or less been debunked of their claim, though many found their info helpful. One can search phoenix rising for them.

    There is also something else to consider: people might be cured but never look back to share with us how it happened. Perhaps they don't know how it happened or they don't want to revisit such a painful time in their life- they want to move on. I vow never to that. And I do believe I will be cured.

    Then there are those who have become functional with remarkable diligence and research and share their protocols. This information I am so thankful for! So @Dster, I am always interested in things you find particularly helpful at calming your nervous system and retraining your brain to heal yourself. But if you claim to be cured, be prepared to back it up with details.
     
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  9. Mij

    Mij Senior Member

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    I have never read a message on this forum where someone claimed to be "cured" overnight by a treatment. This is is what @Dster is claiming. I wouldn't even waste my energy or intelligence on LP if it was offered for free.

    "She is a colleague who I have worked closely with throughout her illness (extremely bad CFS/ME) for 5 years. Did the process and was cured, pretty much overnight"
     
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  10. A.B.

    A.B. Senior Member

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    @Mij

    Dster is also a single purpose account. All of his posts praise Lightning Process as miracle cure. Occasionally he repeats some bits of psychobabble such as CFS being an inappropriate stress response (nice euphemism for hysteria).
     
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  11. Snowdrop

    Snowdrop Senior Member

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    @Dster

    Thank you for your thoughtful and considered response to my (and others) questions here regarding your experience with LP.
    I confess I remain skeptical but am glad for you that you have found it works.
    In your last post (#280) I'm still a bit squeamish about the idea that our responses to internal and external stimuli are inappropriate.
    And I do have one more question for you regarding the efficacy of LP. I know I would feel more comfortable with the narrative of your experience if You would confirm for us here that you are in no way receiving compensation for sharing your experience here.
    I'm sure you can understand why that would be information we'd want to know.

    And if you are willing to continue to engage with us it would be great to know how this treatment works out for you long term.
    Would you say that all your symptoms are 100% resolved?
    Can you do any activity you want without experiencing any repercussions now?
    And do you need to continue to use the techniques you learned from LP or is that no longer necessary?

    If you could just clarify for me, in post #275 you mentioned your symptoms one of which is PEF, I don't know what that is.
    Perhaps you didn't give the full laundry list of symptoms but from what you did write I'd like to point out that while your experience of these would have been quite debilitating it doesn't match the literally dozens of symptoms present in typical ME presentation. While you have the larger more familiar symptoms, pain fatigue, cognitive fog you don't seem to have any of the other symptoms that differentiate ME from any number of other illnesses. Dr's sometimes use the 'loose' Fukuda or Oxford criteria for diagnosis that essentially put anyone with lingering fatigue into the same bucket diagnostic wise.

    Generally with ME other typical symptoms would be: various sleep disruption issues--unrefreshing sleep, sleep interruption, problems falling asleep, --migraines, severe and frequent vascular headaches especially ones that mimic sinus pain, --fasciculations, all over the body and frequent, --sensory issues, sensitivity to sound, light, smell, touch, sensitivity to temperature is very common and so on,
    --heart related issues that can be related to POTS many and varied, --bowel symptoms many and varied, --autoimmune type symptoms, reynauds phenomena, dry eyes or Sjogrens syndrome, and many others.

    With the exception of bowel issues, very common in ME I have chosen examples that I am familiar with from personal experience.
    We all want to get well. Really we do. I just don't see how LP can effectively cure all this? What am I missing?
     
    Last edited: Aug 30, 2014
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  12. IreneF

    IreneF Senior Member

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    I was diagnosed with CFS about 10 years ago, but my symptoms went into remission, then returned after about two years. I've gotten progressively worse since about 2006, with a few bump-ups of feeling better that didn't last more than a few weeks. During my first remission I was working out, doing yoga, hiking, volunteering, and generally having a life. I thought I was over this disease.

    Maybe if I had done something special at the right time I would have called that special thing a cure.
     
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  13. IreneF

    IreneF Senior Member

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  14. IreneF

    IreneF Senior Member

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  15. A.B.

    A.B. Senior Member

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    Interesting. It really resembles a cult that thoroughly brainwashes people into denying reality:

     
  16. chipmunk1

    chipmunk1 Senior Member

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    I have never been there but that's what i would have expected. Actually it's even worse than i had expected.

    They claim you can think yourself a tumor. Dster claimed this as well. The King's College also believes in the negative Personality/Cancer link.

    Tell everyone how great you feel regardless of what is happening.

    You are not allowed to say it doesn't work for me.

    The followers are not allowed to question. Basically they brainwash people into reporting how great the program is and weed out anyone who doesn't. That helps recruit new followers.

    http://en.wikipedia.org/wiki/Stage_hypnosis

    Nothing more than a brainwashing cult.
     
    Last edited: Aug 30, 2014
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  17. chipmunk1

    chipmunk1 Senior Member

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    i have personally tried some "autosuggestive" techniques myself, (Emotional Freedom Technique) I did really change "something" in my mind quickly and i could fool myself for a few days that it worked and that i was better. Looking back i was still as sick as i had been. I am not sure to what extent this was a placebo effect, as it was a bit different from other placebos that i had experienced. I can not say that it was useful for anything. There were a lot of claims of recoveries. From my experience i don't believe it is good for anything. It may briefly change your thinking or get you out of certain states of mind but that's it. There are so many other things that can provide some mild relief for certain subjective symptoms. Nausea or migraine can get a bit better by having a cold shower or emerging yourself in televsion or an other activity. Sometimes just changing your position or walking around can provide some relief.

    So we can influence certain symptoms by changing our perception or by changing focus but if there is something "wrong" it can get you only so far.
     
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  18. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    A Stepford therapist?
     
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  19. Sidereal

    Sidereal Senior Member

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    I've seen enough of these "I swear guyz I am totally cured!!" stories to believe that there is something to these brainwashing programmes like CBT, LP etc. other than people being deluded or lying. It is certainly possible to temporarily flood the brain with enough dopamine, norepinephrine and endorphin to produce good mood, optimism and suppress inflammation and pain, giving the illusion of a cure, while the underlying infectious/immune disease process continues unabated. (People who are severely ill of course don't have the requisite cellular energy to recruit these hormonal responses so these types of programmes do not work for them even temporarily.) But the basic mechanism is comprehensible. At the end of the day, Rx and street drugs for mood disorders work much in the same fashion. Natural processes like a manic episode work the same way. There is an old truism that mania cures everything. It really does until the patient works themselves into exhaustion, sometimes death, or crashes into depression because of course this level of fake activity cannot be sustained forever and the eventual crash comes on, hard.
     
  20. Dster

    Dster

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    Thank you for your thoughtful and considered response to my (and others) questions here regarding your experience with LP. - my pleasure - I thought I had already responded to your post #291 but it hasn't appeared so here goes again

    I confess I remain skeptical but am glad for you that you have found it works. - understand you are sceptical, so would I be if I hadn't had first hand experience of what I'm about to describe

    In your last post (#280) I'm still a bit squeamish about the idea that our responses to internal and external stimuli are inappropriate. I used the term "inappropriate", but perhaps "unhelpful" would be better. For example, I used to suffer from panic attacks due to various stimuli (e.g. a very mild chest pain due to indigestion - a stimulus) which would lead to my body dumping adrenaline into my bloodstream due to me thinking (unconsciously) I was having a heart attack ( an unhelpful/inappropriate response to mild chest pain)

    And I do have one more question for you regarding the efficacy of LP. I know I would feel more comfortable with the narrative of your experience if You would confirm for us here that you are in no way receiving compensation for sharing your experience here. This is an odd question to ask because if I were receiving some sort of compensation I would presumably be the sort of person who would have no compunction about lying and saying I wasn't even though I was! But anyhow, the answer is a categorical no, I am not. LP worked for me and I want visitors to this site to know that for some it can work, rather than they come away with the impression it's complete baloney and doesn't work for anyone, which is untrue.

    I'm sure you can understand why that would be information we'd want to know.

    And if you are willing to continue to engage with us it would be great to know how this treatment works out for you long term. OK, no problem, this forum will be the first to know if I relapse

    Would you say that all your symptoms are 100% resolved? Yes

    Can you do any activity you want without experiencing any repercussions now? I train at the gym 4 times a week (hardcore), I play golf and do the odd bout of High Intensity Interval training at home if I can't get to the gym. I've just come back from a walking holiday in Scotland. No repercussions

    And do you need to continue to use the techniques you learned from LP or is that no longer necessary? I haven't for the last 3-4 months, but my colleague (see below) still has to now and again - with her, symptoms do come back (much milder than before) but she controls them with LP. I understand that I might need to use LP again if I start to relapse

    If you could just clarify for me, in post #275 you mentioned your symptoms one of which is PEF, I don't know what that is. post exercise fatigue - I would feel a bit better, exercise and then crash horribly - this is a very common occurrence for those suffering ME/CFS

    Perhaps you didn't give the full laundry list of symptoms but from what you did write I'd like to point out that while your experience of these would have been quite debilitating it doesn't match the literally dozens of symptoms present in typical ME presentation. While you have the larger more familiar symptoms, pain fatigue, cognitive fog you don't seem to have any of the other symptoms that differentiate ME from any number of other illnesses. Dr's sometimes use the 'loose' Fukuda or Oxford criteria for diagnosis that essentially put anyone with lingering fatigue into the same bucket diagnostic wise. I get the impression that in the UK at least, some patients (including me and my colleague) are dumped in an overarching bucket and might be misdiagnosed - which is why I was very careful to say visitors to this site who have been similarly misdiagnosed might benefit from LP. just because we've been misdiagnosed, it doesn't mean LP is hogwash.

    Below I'll mark your text with either C (colleague) or D (D-ster) to describe the symptoms we had


    Generally with ME other typical symptoms would be: various sleep disruption issues--unrefreshing sleep C/D, sleep interruption C/D, problems falling asleep C, --migraines C/D, severe and frequent vascular headaches especially ones that mimic sinus pain,C/D --fasciculations, all over the body and frequent, C - my colleague's tremors were unbelievably violent and terrifying to watch, I didn't suffer this thank God--sensory issues, sensitivity to sound, light, smell, touch, sensitivity to temperature is very common and so on,
    --heart related issues that can be related to POTS many and varied,C had serious heart issues, including excruciating chest pain which has almost completely disappeared since LP --bowel symptoms many and varied, D (I suffered from chronic IBS which disappeared following LP - literally overnight - I have had one episode since January, strangely enough 2-3 days ago but that's it) --autoimmune type symptoms, reynauds phenomena, dry eyes or Sjogrens syndrome, and many others.

    At the risk of repeating myself on this forum I'd like to describe my colleague's experience - she was basically bedbound during the weekends, and was brought into work by her husband for 2-3 hours a day. As her line manager I had to edit her emails before she sent them due to the cognitive issues her condition was causing. Its difficult to describe how ill she was for 4-5 years but it was awful to watch - utter fatigue, pain, depression, her diction and verbal communication skills were badly compromised, from being a long distance runner she went to taking 5 minutes to walk to the office down the corridor, a distance of maybe 80 feet. And yet the same woman on the evening of the first day of her LP program pulled her suitcase a mile from the course venue to the hotel she was staying at and then went for a short run. She returned to work 3-4 days later and other colleagues came in to see me and said "Have you seen L? She's better!" When I saw her for myself I was flummoxed - her face had colour, her eyes were bright, her gait was upright, she was moving at a normal pace, everything about her outward appearance was transformed. I and those other colleagues in the know were gobsmacked. And when I saw her, it was like that scene in the restaurant from When Harry Met Sally - "I want what she's having!"


    With the exception of bowel issues, very common in ME I have chosen examples that I am familiar with from personal experience.

    We all want to get well. Really we do. I just don't see how LP can effectively cure all this? What am I missing? If I could answer your final question Snowdrop I would - but I can't. It appears impossible, but I'm still well (I did LP in January) and my colleague is still well after 13 months. As a physicist I can understand some pretty weird shit about the universe, but I can't understand this. But everything I've said in this post is true - just because I can't explain it, doesn't mean it didn't happen. I wish you all the very best in your journey and thank you for taking the time to write and be civil - it means a lot to me
     
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