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amazing recovery

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Hip

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That is Henrik Vogt's website. He promotes the view that ME/CFS is a psychologically caused condition, thinks ME/CFS should be treated psychologically, pours scorn on biomedical research into ME/CFS.

I am not denying that in some rare ME/CFS cases, psychological therapies that address locked-in mental stress might be helpful; but that does not mean ME/CFS is not a biological disease. It is. Whereas Vogt seem to dismiss biological approaches to ME/CFS on in his tweets. You can follow his Twitter feed here.
 
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sunshine44

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Thank you. I am excited to follow his work. I had no clue whose website any of this is but I have personally met so may people whom have made full recoveries this year from me/cfs though these types of modalities (4 people in total) that it can no longer be dismissed as rare cases.

When I speak to them and ask questions...it is very clear that the anti-neuro immune limbic system damage retraining programs rhetoric on some me/cfs groups and sites are really causing some damage to some people that could SERIOUSLY be helped. Even if it only means they can get a few new foods in which helps malnutrition, etc.

I do hope in the future there is more gray area and acceptance on sharing some seriously significant stories that could lead to breakthroughs. Until then, these stories are mostly muted and cast off as rare here. We need to be more open minded in this very complicated realm of illness. I envision a future where ME/CFS/Lyme patients can go to limbic system rehab centers in hospitals combined with whatever medical means they may need too.
 

Hip

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I have personally met so may people whom have made full recoveries this year from me/cfs though these types of modalities (4 people in total) that it can no longer be dismissed as rare cases.
It depends where you hang out: if you go to a place like Vogt's website which lists people who have recovered/improved after a psychological therapy, then understandably you might find quite a few examples.

But in my 10 years of reading this forum, which has had 27,000 members over this 10 year span, I have only come across two cases of recovery/improvement from psychological therapy. So 2 in 27,000 is very rare. Both of those two cases went to Reverse Therapy (which I think operates by reasonably sound principles).

But if you feel that psychological factors like locked-in mental stress might be playing a role, it may be worth considering something like Reverse Therapy.
 
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Art Vandelay

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sunshine44

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2 of the people I have met were through a neuro rehab group. The other 2 were through a lyme disease/ cfs group.

Have you guys tried any of these programs?

I am currently in one and it is not a scam or a psychological therapy. It is based off the notion that certain factors (infection, surgery, viral triggers) did indeed occur and limbic system damage has occurred causing widespread disharmony and chaos in organs, hormones, etc.

I have never been told to ignore symptoms or not talk to anyone. Pacing and dips are widely talked about in my group.

Also, how much money have you guys spent trying to get better? probably alot like me. Most of these programs are $300 to own for for LIFE and 100% money back guarantee no questions asked for a year. So, yeah, i am sure they are banking on this stuff.
 
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sunshine44

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A friend of mine with ME/CFS/Lyme just died recently. I think she could of seriously benefitted from some form of this for a variety of reasons which I am not going to go into detail on her and i's severe dysautonomia/bedridden state because its long. But there is such a widespread disdain of the word neuro-retraining in the ME/CFS community and I think that not enough is known about all of this stuff to just oust something that has had trials and so forth show very promising results.

This is something that could be helping more people in minor or major ways but instead people read untrue things about it being psychological treatment and are instantly triggered because most of us have been through hell already and told this was in our head for years. Every person that developed most of these programs had ME/CFS!!! That is how they figured this out. Not some outsider trying to make a buck.
 

JES

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A friend of mine with ME/CFS/Lyme just died recently. I think she could of seriously benefitted from some form of this for a variety of reasons which I am not going to go into detail on her and i's severe dysautonomia/bedridden state because its long. But there is such a widespread disdain of the word neuro-retraining in the ME/CFS community and I think that not enough is known about all of this stuff to just oust something that has had trials and so forth show very promising results.
Can you please link to the trials?

If a treatment is based on good evidence and science, regardless if it's neuro-retraining or psychological, there is no reason to object to it. Anecdotal evidence and bad science, I'm afraid we cannot draw any conclusions from that. There are people every day who claim they recovered from severe diseases thanks to homeopathy or prayer.
 

Jackb23

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A friend of mine with ME/CFS/Lyme just died recently. I think she could of seriously benefitted from some form of this for a variety of reasons which I am not going to go into detail on her and i's severe dysautonomia/bedridden state because its long. But there is such a widespread disdain of the word neuro-retraining in the ME/CFS community and I think that not enough is known about all of this stuff to just oust something that has had trials and so forth show very promising results.

This is something that could be helping more people in minor or major ways but instead people read untrue things about it being psychological treatment and are instantly triggered because most of us have been through hell already and told this was in our head for years. Every person that developed most of these programs had ME/CFS!!! That is how they figured this out. Not some outsider trying to make a buck.
Do you mind elaborating on the limbic dysfunction and how they plan to treat it? I think that they’re most likely referencing a process called “kindling,” it occurs in seizures. Or maybe they’re alluding to Donald Hebb’s what fires together wires together theory/law. While these are scientific concepts, there is absolutely no evidence that they are whats causing me/cfs or that they have anything to do with me/cfs.
I want to remain open minded, most people on this site are, but this seems counterproductive to the ME/CFS community. Even if you’re merely a messenger.
 
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@sunshine44 Thank you for sharing this story!

I understand your anger about this approaches being redflagged all the time. I think the mind is anayway a big part in healing. And I think it must be very hard to admit yourself, the reason for being ill many years was "just in your head".

The problem is, there is no way to test problems with mind. Its just an assumption. And it should be assumed just when everything else is ruled out. Unfotunately thats not how its done. In fact its one of the first explanations you are beeing confrontaded with.

But I consider it as an option for myself as well. All my life I have had big problems to calm down. There is alaways something going on in my head. As you can imagine this doesnt got any better since illnes onset. I believe thats a big part in my condition and I‘m trying to address that.
 
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Have you guys tried any of these programs?
YES.
And it didn't work.
But then I recovered anyway, thanks to a pharmaceutical drug. Yes, I later found out that my illness was caused by some problem with my blood circulation, and in fact the medication that I took improves the blood flow to the brain and circulation in general. Here is my full story, if you're interested: https://forums.phoenixrising.me/thr...ng-response-to-cinnarizine-vasodilator.76889/.

So, I spent three months doing the lightning process, repeating things out loud like "STOP" every time I had a symptom, even though my symptom was due to the fact that my muscles, lungs, heart and brain were probably lacking enough oxygen due to poor blood circulation. But I was instead blaming myself, thinking that I wasn't improving because I wasn't doing the LP right, and this just made me feel more depressed an anxious than ever. So yes, these therapies can be harmful, they were to me (my mental health) and to so many other patients.

Every person that developed most of these programs had ME/CFS!!!
The problem is that people assume that ME/CFS is an homogeneous disease and that everybody's symptoms come from the same root cause. Well, from what I've seen and experienced, it's not. ME/CFS is an endpoint, but there are subsets with different root causes. Assuming that everybody has the same thing is the biggest obstacle to progressing treatment research for this patient population. I do believe that the people that developed these therapies and people who recovered with these therapies were sick with a manifestation of ME/CFS, but I'm 100% sure that they didn't have what I had and what probably most other people (like Jennifer Brea, Jeff, and other who recovered with craniocervical fusion surgery) had. You can try these therapies if you want, but be aware that many people achieved remission with drugs (like me), other pharmacological therapies, stem cells or even surgery too, which is quite telling in my opinion.
 
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sunshine44

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I am frustrated bc I have lived in pure hell waking every time I tried to fall asleep for over a year due to o2 desaturation/pots/adrenal stuff, bedridden for 3 years, drs without a clue, hospitalizations that led to awful stuff, meds (the few left I could tolerate) that made me so much worse....yet when I began this program in August POTS began decreasing within weeks. I am now eating 5 new foods after eating the same 12 foods for 3 years no matter how hard I would try to introduce foods in the past. My cousin's friend I speak to weekly whom is bedridden as well with this was super of the mindset this is crazy, this can't help etc but she has a one year old and between needing a caregiver for herself and her daughter was willing to try it and now she is improving. She just stood up and made herself pancakes a week ago. She took a bath last night and was visiting with her family.

I am frustrated bc why did we not try this earlier. Also, I will say I tried one program first and I did not notice much of anything. Then, a year later I tried a different program and started noticing small shifts within days.

I am not here to convince anyone, so I will not be responding to each of the remarks above but I do want to spread hope for those looking for hope. Even if I only gain 5 foods from this and have pots decrease, well then that's pretty remarkable in and of itself in a few months. Also it does not work if you only understand the concept and do not regular do the work. It is a complete overhaul of ones life so just an fyi that it is definitely not as easy as taking a pill and will require quite a bit of effort at first. I started with only listening for minutes at a time what I could do and then kept gradually pacing.

Be well everyone.

Somehow, someway.
 

sunshine44

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I have had multiple procedures and surgeries over past 10 years for this stuff and although sometimes helpful for a year or two, stuff has most always returned for me. Surgery was more of a band aid for me personally despite being so hopeful. I have had meds galore. I cannot do stem cell therapy in my state of being. Has not been an option.
 
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I have had multiple procedures and surgeries over past 10 years for this stuff and although sometimes helpful for a year or two, stuff has most always returned for me. Surgery was more of a band aid for me personally despite being so hopeful. I have had meds galore. I cannot do stem cell therapy in my state of being. Has not been an option.
I'm really happy that you've finally found something that works for you. My problem is when people that recovered through these therapies start preaching that everyone can recover as well in the same way. It's not true, and I'm living proof. I put much effort in and it didn't work, but I recovered eventually with other treatments. At the same time I'm really glad that you've found your own root cause and treatment and that you're improving too.
 
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Second star to the right ...

Anecdotal evidence and bad science, I'm afraid we cannot draw any conclusions from that.
I agree. Hope based on illusory premises helps no one.
Every person that developed most of these programs had ME/CFS!!! That is how they figured this out. Not some outsider trying to make a buck.
"Insiders" have been known to have an interest in " ....making a buck...." as well.
 

sunshine44

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Anyways, for those in the future searching for threads on things to try, do not let the gray clouds deter you of something that could possibly be helpful.
 
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Wolfcub

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I am probably missing an awful lot here. My brain is not sharp to say the least tonight..
But if we are talking about a 100% positive mental attitude to healing....I mean really believing in that heart and soul, and putting the work in to implement it....
I can say that in my own case it definitely did not work.

Last year I had doctors saying they could not find a thing wrong with me neurologically and otherwise. I had a head CT scan because I considered it might be a brain tumour, and so did the neurologist (or an ischemia of some kind.....or I may have suffered some acute event which had caused mild brain damage, thus resulting in a whole list of physical symptoms.)

The CT would tell us.
I was scary about the results but told myself -OKAY, ZERO tolerance with this if they find absolutely nothing wrong.

They found not one -even tiny thing -out of place.

So then I went home and committed myself to my "zero tolerance" schedule.
LOL....it didn't work.
I woke up with a happy positive attitude. "I am having no more of this".
My first 3 mile walk ended up with pem. Well whaddaya know?

Now, I have improved (I think) over time but it has been nothing to do with my mind's influence over my body.

But...I don't want to just leave it at that because if some process works for someone and they start to feel better, from the hell they were in then power to them !
 
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@Wolfcub
I'm a firm believer in maintaining a positive attitude and staying in gratitude as much as possible not so much because I think it makes a profound difference healing-wise, alto I do think it has an effect, but because it makes an otherwise dismal journey more tolerable !!!!


On the other hand, who knows? We all have different versions of this creepy little albatross of an illness, and we all have different approaches to, and ways of, healing, so if it works for you, then rock on !!!
 
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