My Chronic Fatigue Recovery Story

[Snowdrop]

Yes (Hu)man's search for meaning is quite strong. It's scary to think that the universe is just random and that our place in it isn't meaningful in the grand sense. Having said that we can make meaning of our existence I'm not suggesting nihilism.

 

[melamine]

Broad definitions are vague definitions which leave more room for interpretation. This is not a good thing. What exactly is "emotional neglect", and when is it traumatic? This is a lot more vague than beating or sexual abuse. I'm not surprised to see a high rate of traumatic childhood experiences when the definition of traumatic childhood experiences includes things such as "emotional neglect" and the people being asked have some sort of health problems which can affect the way they perceive things.

I'm getting the distinct impression that the authors are very heavily into Freud, whose stories of curing illness supposedly caused by emotional issues with psychotherapy were shown to fabricated. He quite literally claimed that patients were well and healthy, when they actually had no improvement in health or had deteriorated.

I guess Freud is in the eye of the beholder. I am well aware of his disreputable methods.

To clarify - the questionnaire does not ask sick adults if their childhoods were traumatic. It asks specific questions as, for instance, whether they either witnessed or experienced directly, specific behaviors or events, and offers a choice ranging from none through various degrees of frequency. People do not necessarily consider their childhood to have been adverse in ways the study does.

I think I've said all I can say on the subject. People can look at it for what it's worth to them.

 

[Tired of being sick]

I got five on it that you never had CFS/ME

I''ll put a million on it.................

 

[chipmunk1]

why is it always ME/CFS that can be cured with talk therapy and becoming a better person?

Why not a broken leg or cancer?

I never hear: my appendix ruptured because i had some negative thoughts or my MS went away because i forgave my dad. if the psyche makes your immune system so dysfunctional the psyche could cause almost anything.

cancer, autoimmune disease etc..

why would it be limited to ME and fibromyalgia?

P.S. Does the mickel therapy do long-term follow ups? (I apologize for the F word)

Does anyone still remember "Primal Therapy" which had a "stellar" 98-100% success rate ?

 

[Tired of being sick]

why is it always ME/CFS that can be cured with talk therapy and becoming a better person?

Because unless people experienced an illness themselves or anything for that matter.
It is mumbo jumbo from another planet to them..

People are simply retarded when it comes to this type of comprehension..

Might as well be an ape playing with his shit in the middle of a freeway..

You don't expect people do be understanding toward each other when in fact they are taught from birth that human survival is a life long competition fight against one another and all humans..

In fact, the sick are easy targets/prey..As well as those who show weakness through caring about the weak and sick..

Human's are more animalistic than every beast on Earth..

After all,humans rule the Earth and every living thing on it, do they not?

Only the Fittest survive..

 

[Tired of being sick]

I'm willing to lay money on it that if the majority of CFS/ME suffers were not sick..

They would definitely not know,understand or even care about the illness itself..

This then immediately raises the question :

Are CFS/ME sufferers, by nature, selfish?

 

[JAM]

I'm willing to lay money on it that if the majority of CFS/ME suffers were not sick..

They would definitely not know,understand or even care about the illness itself..

This then immediately raises the question :

Are CFS/ME sufferers, by nature, selfish?

Guess I would be in the minority along with the majority of people I know with ME/CFS. Most seem to be in some kind of helping profession, are care givers for other family members, etc.

 

[Tired of being sick]

Not going to argue but you just claimed that CFS/ME attacks mostly thoughtful, caring people by nature..

 

[alex3619]

Not going to argue but you just claimed that CFS/ME attacks mostly thoughtful, caring people by nature..

Or, having suffered enormously, we become caring people from experience?

With regard to the rest of the thread:

The best miracle cure I ever heard of was laetrile for cancer. A clinic in Israel claimed everyone cured. This made headlines. A year later a reporter went back. Every patient was dead. Of cancer.

In the history of psychosomatic illness, claims to treat or cure occur regularly. They first claim an illness is psychosomatic, then claim they can treat or cure it. Like with tuberculosis, epilepsy, type 1 and type 2 diabetes, all cancers but especially breast cancer, lupus, MS, gastric ulcers ... its a very long list. There are ZERO scientific papers showing that any such claim has ever been extensively substantiated. As can be seen from my list, there are lots of cases where its been disproved.

Now I do not doubt that people can suffer from dwelling in unpleasant emotions, or have those resurface substantially outside of their control from PTSD. Nor do I doubt that various psychotherapies can improve quality of life. Nor do I doubt some patients recover. What is lacking is evidence recovery is reliably due to psychotherapy. This does not mean that the hormonal influences from anger etc. might not result in symptoms. They might. That these can cause specific identifiable complex syndromes is very unlikely though. Somatization disorders, and similar, are so far a myth, a religion, and one that is widely worshiped.

The idea that there are some psychosomatic/psychogenic illnesses, and that we can cure these, remains an open question. They have not been shown right once, and have been shown wrong many many times.

I have yet to see sound evidence that even one psychogenic illness exists. I think emotions can trigger brain injury, if intense enough, but its then a neurological condition. I also think that some learned thinking responses might assist coping.

Freud is discredited. He either knowingly engaged in fraud, or was incompetent. Remnants of Freudian theory, including conversion disorder, are highly dubious at best, and substantially unscientific. Even when more objective options are available its common for them to be rejected, like in the middle of the PACE trial with regard to actometers.

Its good when someone recovers. Its good that something can assist coping.

Its natural many of us will be sceptical of recovery stories for therapies that have been widely tried and found useless, and for which there is patently inadequate if not nonexistent science.

 

[Tired of being sick]

Or, having suffered enormously, we become caring people from experience?

Bingo!

 

[ChronicFatigueSurvivor]

Dear me, I see that my post has caused a stir (this is my first time going back to read the replies). Thank you all for considering it to be worth the time (and precious energy) to write, whether for or against.

In response, I'll really just say that my intention was not to start any kind of argument, especially as any argument is futile -- I understand that there is NO WAY to prove my story to anyone, or even to prove any part of it. But that wasn't the point for me writing. My intention was to tell my story in the hopes that some person reading it would try it out for themselves (whether out of hope, or out of trying to prove it wrong) and it would help them.

@jeff_w I'm more than happy to reply to your questions, though I have no way to prove whether or not what I had really was ME -- I was diagnosed with it, had all the outward symptoms of it, and sustained them for a year, but still, it's no proof to anyone. I was tested for all kinds of viruses, though I wasn't found to have any (at the time of testing). I had tons of blood work done, with nothing ever being found. I did have orthostatic intolerance. At one point an over-eager doctor diagnosed me as having IBS -- I didn't think I had enough of the symptoms of IBS for him to say I had it though, and the doctors I went to later on confirmed that he had been wrong.
As far as my recovery goes, I do feel that I know there was causation along with the correlation, but again, no possible proof. I do believe it was more than suppressed-something-or-other that made me sick initially; I believe there were multiple factors combined, as I believe most people who are chronically ill have various stressors (whether virus, bacterial, trauma, toxins, etc) causing them to be ill. I think that's why there's no one answer found for ME - multiple contributors. The therapy I did just happened to be the tipping point for me to break through the surface.

@daisybell I'm sorry that Mickel Therapy didn't end up working for you, but the very fact that you had an open enough mind to try it makes me think that you have a good chance of eventually finding your own personal cure (or cures).

I'd really like to somehow prove my claim, but I know I couldn't do that, even if I was a doctor, and I know some people would like to prove me wrong, but that can't be done either; we can't prove anything to each other, we can only prove things to ourselves.

Please prove to yourself whether or not talk therapy makes any difference by taking the challenge. It won't hurt anything. You can prove to yourself whether I'm wrong or not.

 

[Snow Leopard]

why is it always ME/CFS that can be cured with talk therapy and becoming a better person?

Why not a broken leg or cancer?

They've been trying to promote various talk therapies for cancer for basically, forever. The problem is that talk therapies (and things like positive thinking) have no impact on cancer survival rates. At the same time however, people with cancer are still pushed into such therapies, but they say they're concentrating on coping, improving quality of life etc.

 

[Valentijn]

I'm sorry that Mickel Therapy didn't end up working for you, but the very fact that you had an open enough mind to try it makes me think that you have a good chance of eventually finding your own personal cure (or cures).

Being open-minded doesn't cure diseases. And it doesn't even help with "finding" a cure for biological diseases which don't yet have cures, unless the patient is also an intrepid researcher with funding.

Please prove to yourself whether or not talk therapy makes any difference by taking the challenge. It won't hurt anything. You can prove to yourself whether I'm wrong or not.

Talking therapy can be and has been very harmful for many of us. Psychologists pretending to help us cope have turned on us once a relationship was established, and begun pushing us to be more active, cast aside our disability aids, and stop thinking of ourselves as ill. This has lead to suicide attempts in some and extreme distrust of therapists in many more.

And since most of us don't have repressed emotions and such, I'm not sure why you assume there would be a benefit. If I need to vent about nasty therapists, I'd rather do it here, especially since getting out of the house is such a struggle.

 

[daisybell]

@ChronicFatigueSurvivor Mickel therapy was never going to work for me. I went along because I was at that time willing to try anything.... It was a waste of my money, my energy and my time. Talking therapy is not the answer for me. No talking therapy is going to cure auto-immune diseases.
If talking therapy worked for you and what was wrong with you, that's great. However, telling others to try it is IMO not helpful. Each person needs to do what they think is right for them, and I think it is important that we can all make up our minds without pressure, and in possession of facts about our illness.

 

[Scarecrow]

Please prove to yourself whether or not talk therapy makes any difference by taking the challenge. It won't hurt anything. You can prove to yourself whether I'm wrong or not.

Tried the talk therapy. Didn't work. Case proven.

That was after the DIY Lightning Process for my 'psychosomatic illness' well before Phil Parker ever thought of the idea. Denial's a powerful thing. It's amazing how far you can push yourself and tell yourself the symptoms just don't exist or don't matter. I kept at it long after common sense should have told me to stop and it got really, really ugly.

 

[CFS_for_19_years]

I'm more than happy to reply to your questions, though I have no way to prove whether or not what I had really was ME -- I was diagnosed with it, had all the outward symptoms of it, and sustained them for a year, but still, it's no proof to anyone. I was tested for all kinds of viruses, though I wasn't found to have any (at the time of testing). I had tons of blood work done, with nothing ever being found. I did have orthostatic intolerance. At one point an over-eager doctor diagnosed me as having IBS -- I didn't think I had enough of the symptoms of IBS for him to say I had it though, and the doctors I went to later on confirmed that he had been wrong.

You certainly do have a way to prove whether or not what you really had was ME - did you fit the CCC criteria?

http://www.mecfsforums.com/wiki/Revised_Canadian_Consensus_Definition

Seems pretty straightforward to me.

 

[chipmunk1]

Please prove to yourself whether or not talk therapy makes any difference by taking the challenge. It won't hurt anything. You can prove to yourself whether I'm wrong or not.

I know several people close to me who did various talk therapies for various (usually chronic or recurring)physical or emotional ailments. No person that i know of experienced long term or permanent remission of symptoms.

In some cases the long term outcome was devastating. All or most claimed that therapy was very helpful but objectively they seemed to do quite poorly and continued to suffer despite years and years of "therapy".

 

[Gingergrrl]

@daisybell I'm sorry that Mickel Therapy didn't end up working for you, but the very fact that you had an open enough mind to try it makes me think that you have a good chance of eventually finding your own personal cure (or cures).

@ChronicFatigueSurvivor I don't think you have any idea how hurtful and insulting these kinds of statements are (and to clarify, it has nothing to do with daisybell, she just happened to be the name you quoted.) You are insinuating that if someone has an open mind and tries "Mickel Therapy" that they then have a better chance of recovering from a brutal physical illness such as ME/CFS. Therapy (of any paradigm or orientation) cannot cure true ME/CFS any more than it can cure MS, cancer, epilepsy or HIV.

And I am saying this as an LCSW/therapist who believes in the process of therapy- both as a clinician and client. I am not coming from an anti-therapy perspective but from the perspective of someone who understands what it can and what it cannot do.

If you had a person with a medical illness that was treatable & manageable but the person was very depressed and not taking their meds or following treatment then therapy could be very helpful to explore why. If the therapy helped to improve their depression, which in turn gave them the motivation to take their meds and go to their doctor appts, then indirectly it could certainly be a major factor in their improvement of a health issue. But this is not what you are stating.

I saw a therapist for several months when I first got ill who was a PhD in health psychology (which is not too common here.) She specialized in working with clients with diseases such as ME/CFS, Lyme, fibromyalgia and other chronic invisible illnesses. She helped me cope with feeling betrayed by my workplace (who did not believe I was ill and betrayed me in the end) and I almost made a very poor decision to resign. This would have caused me to lose health insurance for my entire family and lose the disability plan which is now paying 70% of my salary. By exploring all the pros and cons with her, it helped me to make a decision to not resign which would have been an egregious mistake on my part.

She helped me to make all kinds of pros and cons lists in decisions I was trying to make, helped me to get concrete info on disability that I needed, helped me with some relaxation exercises when I was feeling extremely hopeless, and taught me that my "Job" now is to rest and get better and my self-worth is not based on my ability to work in my career. She also helped me deal with feelings of guilt and I certainly "vented" to use your term and processed my anger and feelings about being ill.

But it did nothing to change the course of my physical illness because it is a physical illness. You are talking to a board full of people who would do anything under the sun to see some improvement and our lack of getting better is not due to a lack of motivation or follow-through or willingness to try new things.

 

[CFS_for_19_years]

It's always the newbies with five or less posts who have "found a cure" and berate us for "not trying hard enough."

Get a clue.

 

[Tired of being sick]

I have been seeing a therapist for over one year now..

From our first session until about one month ago she was all but convinced that my CFS/ME/POTS was caused by
Major Depression,ADHD and Anxiety..

After me bitching to her about doctors not knowing there ass from a hole in the ground such as misdiagnosing me,
overlooking key (jump out at your face symptoms),malpractice ETC for a year then me proving it later on with doctors who actually were competent and paper work proving malpractice by others.

She has now changed her tune and has asked me to supply her with function.report-adult third party SSA disability forms so she can put her two cents into the abuse I have been receiving from doctors,lawyers and the SSA themselves..

Quite frankly she is appalled once I carefully went over everything with her from doctor records and the actual
judge's decision where he actually put words into her mouth..

Therapists are the greatest asset to CFS/ME sufferers when they actually listen with an open mind while having sincere concern..