Hypnosis for PEM ?

[Billt]

Just wondering if anyone has ever tried this for PEM. We have been through so many drugs and supplements to try to help him with the fatigue ! Even trying to concentrate for a short while will completely wipe him out for days. Could hypnosis help ? nothing else has. Any experience's from anyone here ? We are considering
trying this as we are out of ideas. Thanks Bill

 

[Valentijn]

Could hypnosis help?

No. Hypnosis doesn't cure biological diseases.

Since you don't seem to understand what ME is, I suggest reading one or more of:
ME International Consensus Criteria
ME/CFS Canadian Consensus Criteria
The IOM Report on ME/CFS

It would also be a bad idea to assume that it can't hurt to try hypnosis or some other psychological therapy. Please understand that these approaches have made children and teenagers suicidal, as they explicitly or implicitly include the suggestion that the patient can recover if he wants to badly enough. This can trigger even more guilt in a child who already feels as if he is ruining his parents' lives.

There has also been a case of such a "treatment" brainwashing an adult patient to the extent that he had to be hospitalized against his protests due to physical illness, and had to be deprogrammed to be able accept that he was actually very sick. It can be extremely dangerous for someone who is ill to believe that they are healthy.

 

[A.B.]

Research indicates that PEM has a biological basis so hypnosis cannot help. Hypnosis, or any psychotherapy could help if the problem is a lack of confidence or motivation.

 

[Billt]

No. Hypnosis doesn't cure biological diseases.

Since you don't seem to understand what ME is, I suggest reading one or more of:
ME International Consensus Criteria
ME/CFS Canadian Consensus Criteria
The IOM Report on ME/CFS

It would also be a bad idea to assume that it can't hurt to try hypnosis or some other psychological therapy. Please understand that these approaches have made children and teenagers suicidal, as they explicitly or implicitly include the suggestion that the patient can recover if he wants to badly enough. This can trigger even more guilt in a child who already feels as if he is ruining his parents' lives.

There has also been a case of such a "treatment" brainwashing an adult patient to the extent that he had to be hospitalized against his protests due to physical illness, and had to be deprogrammed to be able accept that he was actually very sick. It can be extremely dangerous for someone who is ill to believe that they are healthy.

Thanks for the response. You are right, I don't know everything about ME, but living with someone that has had it for quite some time, I think I have a fair idea. and if anyone has had positive results, then it may be worth considering. Maybe. Interesting, sure don't want to make him worse. Thanks for the input .. Be well... Bill

 

[Valentijn]

and if anyone has had positive results, then it may be worth considering. Maybe.

If you look hard enough, you'll find someone claiming positive results from every ridiculous possible treatment. Doesn't mean it's a good idea to try any of it

 

[Billt]

If you look hard enough, you'll find someone claiming positive results from every ridiculous possible treatment. Doesn't mean it's a good idea to try any of it

With ME as you know, you have to look hard because there is not much help out there that is knocking on your door.
That is why I am so thankful for this forum !! You can get honest and direct answers from those who have personal experience which is invaluable Thanks V..

 

[M Paine]

Seriously, hypnosis? I think at thins point it sounds like you yourself may need some sort of help dealing with the desperation you are feeling. If you are feeling that you are 'desperate' and willing to try anything, because nothing is working... I suspect you are not coping well, and may end up negatively effecting your child by making them feel anxious.

Really there is a good long term prognosis for this disease. The scientific community is honing in on the causes, and several drugs are being trialed which have already shown very positive results with patients. There is no 'cure' outside of a therapy that will address the underlying problems with the immune system. Until that treatment is available, what you are doing now is to minimize the effects of the illness, and improving overall health without aggravating the illness.

In general, rest while experiencing malaise and fatigue, careful exercise when able, good diet, take supplements if you want,, meditation can help... but understand, that these are techniques to improve the overall health and condition of a person, not to 'cure' the illness.

I have had many times where I have not felt able to get out of bed, but currently I'm training for a half-marathon, am working as a computer programmer, have a wife, friends... but still every now and then I can't get out of bed. I'm one of the lucky ones. It's not easy, but it's possible. Not if you get overwhelmed with feelings of hopelessness. There WILL be a cure, but hypnosis is NOT IT.

 

[Billt]

Seriously, hypnosis? I think at thins point it sounds like you yourself may need some sort of help dealing with the desperation you are feeling. If you are feeling that you are 'desperate' and willing to try anything, because nothing is working... I suspect you are not coping well, and may end up negatively effecting your child by making them feel anxious.

Really there is a good long term prognosis for this disease. The scientific community is honing in on the causes, and several drugs are being trialed which have already shown very positive results with patients. There is no 'cure' outside of a therapy that will address the underlying problems with the immune system. Until that treatment is available, what you are doing now is to minimize the effects of the illness, and improving overall health without aggravating the illness.

In general, rest while experiencing malaise and fatigue, careful exercise when able, good diet, take supplements if you want,, meditation can help... but understand, that these are techniques to improve the overall health and condition of a person, not to 'cure' the illness.

I have had many times where I have not felt able to get out of bed, but currently I'm training for a half-marathon, am working as a computer programmer, have a wife, friends... but still every now and then I can't get out of bed. I'm one of the lucky ones. It's not easy, but it's possible. Not if you get overwhelmed with feelings of hopelessness. There WILL be a cure, but hypnosis is NOT IT.

M Paine, I appreciate your honest response, but I don't think you read my comments very well. Nowhere did I say we were desperate and willing to try anything. That was the point of the post, to see if anyone else had any experiences good or bad. I don't think any us us here would try something without a fair amount of research..

Good long term prognosis ? May I ask which drugs are helping with very positive results ?

I know there will be a cure some day and we all hope that day is sooner than later. I think it is important to EXPLORE all options for possibilities to minimize this illness. The only responses I have gotten on here are negative which is interesting since no one had a personal experience. But that in itself is enough for me to not consider it.

May I ask how long you have had this and how you have gone from the bed to training for a race ? That is fantastic !!! Sounds like you are leading a fairly normal live , I am VERY happy for you and hope you keep improving.

There is always hope my friend ... Keep an open mind

 

[Seven7]

I am convinced PEM is an inflammatory process, Try a few Aleve next time (has to be Aleve (NSAID) ). Follow bottles instructions until PEM is gone. This is just so you see if yours is inflammation, obviously long term solution is needed.

I am no doctor just my experience, so just a thought not a recommendation.

 

[M Paine]

Thanks for your suggestion, I have been experimenting with Ibuprofen and have found it is working for me during PEM, I will look at trying Naproxen.

 

[M Paine]

I'm sorry to have come off so negatively or to have been over the top in my post. I think that people suffering from CFS/ME have had a history of being treated incorrectly for behavioral issues, or other mental issues. Studies have proven the link between the immune system and CFS/ME. Immune system issues cannot be cured with CBT or Hypnosis. Those kinds of treatments might help with some of the symptoms or help a person to avoid depression, or perhaps to improve their mental health and well being, but it will not address the underlying cause of the disease.

If you look at the cytokine analysis that Mady Hornig and her group performed (https://www.google.co.nz/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=mady hornig cfs), there is no doubt that CFS/ME is a disease of the immune system.

The drug I mentioned is called rituximab. I suggest looking at the dedicated forum area dedicated to it (http://forums.phoenixrising.me/index.php?forums/rituximab-news-and-research.71/)

 

[Gingergrrl]

I think some of these responses are way too harsh re: @Billt's question which was coming from a place of sincerity to help his son who is very ill. He is investigating all avenues and asking for feedback which we all have done (or at least I know I have.) His son is lucky to have such a caring and involved father IMO.

 

[M Paine]

Yes, I agree. I apologize for my initial post. Like I tried to explain, I think some of us are a bit sensitive to the idea of a psychosomatic cause for this disease.

Sorry Billt, good luck

 

[Snowdrop]

Hi @Billt

Your description of your son's condition was brief so I may what I have to say may be off.
But sometimes POTS can be mistaken for PEM in which case there are treatments that help that.
I think it's been said that about 80% of people with ME have Orthostatic Intolerance.
see here:http://www.dysautonomiainternational.org/page.php?ID=30

There are also ME specific treatment centres--OMI and At Nova Southeastern U. But you may already know that.
For the most part if you're talking about treating the PEM pacing is the best approach at least to start off as the base treatment.

 

[SOC]

I don't see any way hypnosis could help with PEM. Hypnosis might work with changing bad habits, or dealing with irrational fears -- basically pathological thought processes. I don't see a process by which it can correct an illness or a physiological dysfunction. You can't fix cancer or MS or the flu with hypnosis. Similarly, you can't fix the physiological dysfunction behind PEM with hypnosis.

You might hypothesize that hypnosis would correct PEM, but only if you believed PEM was the result of some form of false illness belief which can be replaced through hypnosis with a correct belief... and I don't think you do believe that.

 

[Hutan]

I want to echo @Gingergrrl's post. I have mild-moderate ME and so does my son. Sometimes I find myself wondering if I could just think my way out of being ill. And if my son could try harder. This is despite me having spent hundreds of hours reading about the illness, living with it daily and having tried unsuccessfully to pretend that I'm well lots of times. I absolutely get that what we have is a physical disease and I strongly put forward that view to sceptical doctors. But without clear biomarkers, without obvious physical signs and in this environment where highly qualified medical specialists will just tell you to go practice mindfulness or GET, it's natural to occasionally doubt.

How much harder then must it be for a parent without ME themselves to not occasionally wonder if some kind of behavioural modification or psychological intervention might make a difference? These parents are accompanying their children through the hell of this illness. I think we need to cut them a bit of slack, especially if they have taken the time to come to this forum to ask questions.

Hypnosis, if it does anything at all, may perhaps help with pain or things like tinnitus, by directing focus elsewhere. I can't see how hypnosis could possibly stop PEM.

@Bill, good on you for being there for your son. Snowdrop had a good suggestion about investigating orthostatic intolerance.

 

[lansbergen]

Hypnosis, if it does anything at all, may perhaps help with pain or things like tinnitus, by directing focus elsewhere.

Not how I had it. No distraction could lessen it.

Tinnitis has long disappeared and pain is less severe now but distraction could not lessen it.

 

[Billt]

I am convinced PEM is an inflammatory process, Try a few Aleve next time (has to be Aleve (NSAID) ). Follow bottles instructions until PEM is gone. This is just so you see if yours is inflammation, obviously long term solution is needed.

I am no doctor just my experience, so just a thought not a recommendation.

Thanks, great idea ! We actually have not tried this as he is not sore just fatigued. Well worth the try. Thanks Bill

 

[Billt]

I'm sorry to have come off so negatively or to have been over the top in my post. I think that people suffering from CFS/ME have had a history of being treated incorrectly for behavioral issues, or other mental issues. Studies have proven the link between the immune system and CFS/ME. Immune system issues cannot be cured with CBT or Hypnosis. Those kinds of treatments might help with some of the symptoms or help a person to avoid depression, or perhaps to improve their mental health and well being, but it will not address the underlying cause of the disease.

If you look at the cytokine analysis that Mady Hornig and her group performed (https://www.google.co.nz/webhp?sourceid=chrome-instant&ion=1&espv=2&ie=UTF-8#q=mady hornig cfs), there is no doubt that CFS/ME is a disease of the immune system.

The drug I mentioned is called rituximab. I suggest looking at the dedicated forum area dedicated to it (http://forums.phoenixrising.me/index.php?forums/rituximab-news-and-research.71/)

No Problem M Paine, I appreciate your response and ideas. Just wanted you to know that we were not running out the door to try this. Wanted any and all ideas or experiences from my PR family. I am surprised though that no one has tried this even if it was out of deperation

AS Gingergrrl said, I am looking at all options that could help. The medical field has not done anything for him yet.
I know there is no magic pill, but we have all heard of several people on this forum who have been helped by different means. And since his PEM is mainly from brain fog I thought this MAY be a way of helping that part.

Thanks for the links. I will take a look at those. And thanks again for your comments. I know we are all here to help each other. Be Well........ Bill

 

[Billt]

Hi @Billt

Your description of your son's condition was brief so I may what I have to say may be off.
But sometimes POTS can be mistaken for PEM in which case there are treatments that help that.
I think it's been said that about 80% of people with ME have Orthostatic Intolerance.
see here:http://www.dysautonomiainternational.org/page.php?ID=30

There are also ME specific treatment centres--OMI and At Nova Southeastern U. But you may already know that.
For the most part if you're talking about treating the PEM pacing is the best approach at least to start off as the base treatment.

His CFS/ME seems to be from EBV which he can't seem to shake off. Parts of his immune system are off. Low CD4 and CD19. Doctors seem to think this is the problem. Immune system working 24/7 and can't get him over the EBV so he is completely worn out. I have checked into POTS and he doesn't have those symptoms

We have been to OMI and working with Dr. Kaufman for the last 6 months. He is throwing lots of things at him but so far nothing. Maybe just needs more time, but we were hoping and praying to see some ( any ) improvement by now.

Thanks for the response.. Bill.