How to deal with crashing after doing lightning process, Mickel therapy etc?

[Cfs2019]

My symptoms have always been quite low, I've never really had severe m.e. but I've tried quite a few therapies for cfs

Lightning process, Mickel therapy, reverse therapy, optimum health clinic etc

Each time I've done one of them I've totally crashed, I've gone from having quite mild cfs to being a guy who can barely get out of bed, not just once but every single time, for example with Mickel therapy, I saw four therapists and each time I crashed massively.

I'm guessing it's because I'm overdoing it after doing the therapy, but when I ask them for an answer they go quite aloof and shut down on me

Anyone got any advice or experienced similar?

Thanks

 

[LINE]

Perhaps you can clarify the basis of these treatments. The way I understand this is that these are treatments designed to find a psychological cause of ME?

 

[Treeman]

I'm guessing it's because I'm overdoing it after doing the therapy, but when I ask them for an answer they go quite aloof and shut down on me

Anyone got any advice or experienced similar?

I think that's your answer. I always experience a crash if I over do it.

 

[Cfs2019]

Perhaps you can clarify the basis of these treatments. The way I understand this is that these are treatments designed to find a psychological cause of ME?

Okay I'll try my best

I'll go through each one individually

With the lightning process, they gave me a technique to change my thoughts

It was something like - stop - notice your thoughts - choose the pit or choose the life you love and then take action, there's a physical action to it, so you'd stand on different spots, left for negative, right for positive etc, so I'd choose the life I love and I'd do more and crash and they'd blame me

For Mickel Therapy it was quite similar but it was about emotions at first and then they changed it to 'keys to health' which made it a bit more complicated

So the first time I'd do it, I'd have to be aware of every emotion, they told me there's only five emotions - joy, lack of joy, anger, grief or fear.

So for example the goal would be to say feel boredom and then take action, so I could be at home feeling bored, search my 'body mind' for what it wants and take action, so I may go to the shop or walk the dog etc, it was going okay for me but nothing spectacular really

Then they switched from emotions to 'keys to health'
Key 1 - was create boundaries
Key 2 - was a facilitator key which made it quite complicated
Key 3 was put yourself first

I'd get in a lot of arguments and eventually I'd crash, it's like they turned a non complicated therapy into a complicated one for no good reason, it was odd, again when I crashes they'd blame me and shut down on me, I never actually spoke to Dr Mickel, the therapists were difficult to deal with and quite judge from my experience, my main crash came when I decided I wanted a career as I was still quite young at the time and the stress overwhelmed me but this was my fault too it felt like. Another time they told me I was bored in the evening, which was true, I got a driving job and I crashed with stress, but this was my fault

Reverse therapy was quite similar, it was a bit better as they would give you a root cause and have a conversation with you, rather than a set of 'keys' they weren't reading from a script as much, it cured me for a few hours after my second session, but when I took action I crashed, I decided I wanted to live in a new city, I was younger and the stress of it made me crash and again they blamed me,

Both of them I found the therapists quite manipulative and judgemental and they'd often pass you from one therapist to the next, it felt unprofessional, at first it was two doctors, then they seemed to employ a load of energy healers types who gossiped and just confused me, at first then two therapies were combined, I went to Edinburgh then london, then Liverpool, then Warrington, then a few people on Skype etc, it was exhausting.

With the optimum health clinic, I couldn't afford the nutritional course but I did the 90 day therapy one. It started off okay, they taught me a technique to slow down my mind chatter, which I found interesting, it is something I have a lot and I learned about the stress response etc, the second session was about emotions, I learned I was bored in the evening, I started to go to some football games and I found it quite stressful, maybe because I was working and heading off on the train for an hour was a bit too much, I crashed and yeah they blamed me as well and shut down on me, but they told me to act on my emotions, which I did and when it backfired they blamed me

I'm not sure what else to say really, hopefully I've worded it well, but that's been my experience and how I've crashed each time etc

 

[LINE]

@Cfs2019 Thanks for clarifying, I was just confused why they were focusing on psychology and not the biochemical aspect of the psychology. (Hope I don't sound snarky).

Research clearly points to the biochemical aspect of the disease - many systems are pushed including the endocrine system (adrenals) and the immune/nervous system. I am somewhat bothered when the wrong narratives are being pushed. The first two should have focused on providing some of the nutritional needs that could push back on the frustration. I can provide a short list if you like. I would agree that proper psychology can help, but I don't think it is the root cause of the problem. My opinion.

I am not sure if I have understood correctly or if I have been helpful, you are welcome to let me know.

 

[linusbert]

everything that LINE said!!
psychological therpay should be assistive but not causative. and always very carefully.
the miracle psychological issue doctors always promise which just needs to be resolved and then automatically your biochemistry gets fixed, is borderline insane.

Anyone got any advice or experienced similar?

yes happend me after every doctor visit in the beginning. they wanted to proof me that if i push with exercise everything will be fine. they really crippled me down.
and of course afterwards the gaslighting, its never their responsibility or wrong therapy... its always the patients fault if the doctor does something wrong.
i just can say, stay away from those doctors.

 

[Cfs2019]

@Cfs2019 Thanks for clarifying, I was just confused why they were focusing on psychology and not the biochemical aspect of the psychology. (Hope I don't sound snarky).

Research clearly points to the biochemical aspect of the disease - many systems are pushed including the endocrine system (adrenals) and the immune/nervous system. I am somewhat bothered when the wrong narratives are being pushed. The first two should have focused on providing some of the nutritional needs that could push back on the frustration. I can provide a short list if you like. I would agree that proper psychology can help, but I don't think it is the root cause of the problem. My opinion.

I am not sure if I have understood correctly or if I have been helpful, you are welcome to let me know.

Yeah a short list would be great , I'd appreciate it,.

They all seemed to say the root cause was a hpa axis, or nervous system thing

It went over my head a little bit but I remember the first time I went, they showers a diagram of the hpa axis and talked about the hypothalamus being overactive. It was a big relief for me to hear that and I felt great for a short time, but the techniques or advice they gave me made me deteriorate.

 

[keepswimming]

I'm so sorry you have been through this. Please know that this is not your fault.

My understanding is this: ME is a physical illness, and physical illnesses cannot be cured through psychology or thinking positive. Yes psychology can be helpful if it is designed to help us to cope, and it's true that calming the nervous system can be beneficial for our health. But psychology cannot fix our faulty bodies, and pushing through can make us sicker.

I haven't done any specific programs, but I have certainly tried to cure myself by thinking positively in the past! Every time I have done this I end up overdoing, and crashing.

For me, acceptance of my limitations and learning how to pace have been life changing - not by making me better, but by giving me a better quality of life.

I once heard someone say "you can't fight this illness, you have to work with it as a friend" and that really stuck with me.

 

[hapl808]

It went over my head a little bit but I remember the first time I went, they showers a diagram of the hpa axis and talked about the hypothalamus being overactive. It was a big relief for me to hear that and I felt great for a short time, but the techniques or advice they gave me made me deteriorate.

It's designed to go over your head. With pseudoscientific BS babble. Fake explanation for real things. Yes the hypothalamus is real, no their explanation for how to 'fix' it is not.

Like Dr Gupta from Oxford, although I think he neglects to mention his doctorate is in philosophy if I recall. So if you have an acute philosophical poisoning, maybe he's the guy to see.

You can convince (brainwash) someone with a torn ligament that the pain isn't real. But if they keep pushing it, the damage is very real.

I can push through the beginnings of a crash - I did it many times. It often led to permanent declines.

 

[Rufous McKinney]

It was something like - stop - notice your thoughts - choose the pit or choose the life you love and then take action, there's a physical action to it, so you'd stand on different spots, left for negative, right for positive etc, so I'd choose the life I love and I'd do more and crash and they'd blame me

that would crash me, from cognitive exertion.

hey taught me a technique to slow down my mind chatter, which I found interesting

that sound useful. We have literally overheated brains, and that contributes to alot of brain chatter in my expert opinion.

Curious what their technique for that one is.

 

[Cfs2019]

that would crash me, from cognitive exertion.


that sound useful. We have literally overheated brains, and that contributes to alot of brain chatter in my expert opinion.

Curious what their technique for that one is.

I'll post the techniques tomorrow

 

[LINE]

Yeah a short list would be great , I'd appreciate it,.

They all seemed to say the root cause was a hpa axis, or nervous system thing

It went over my head a little bit but I remember the first time I went, they showers a diagram of the hpa axis and talked about the hypothalamus being overactive. It was a big relief for me to hear that and I felt great for a short time, but the techniques or advice they gave me made me deteriorate.

That part they have right (about the HPA). The HPA axis simply means there is a network of endocrine systems that fire up when encountering stress. That stress could be psychological, and we all know that ME people have loads of that Doctors, jobs, money, social networks, self-blame etc.

But the HPA axis is also triggered with immune stress or toxins.

So, the HPA axis can be triggered from both factors. The problem is when we have say a psychological stress then it triggers the immune response then things go wonky. An example of this is going to a counselor who fails to give a proper directive then starts to blame you for the problem and we have to give them money for bad advice. I say this tongue in cheek but also out of seriousness.

This event then triggers our HPA which triggers other systems in our body which leads to a crash. Another example would be say an allergen, maybe food or environmental. This will set off the immune response which triggers a HPA response.

It really is a big circle. Therapy can be somewhat helpful in that it can help to help identify what triggers we have and how to try to stop it. Sometimes those triggers are quite big and it can set it off for a while. I recently had an event with some people that triggered me. It can set off a whole cascade of madness.

The therapists use cognitive therapy which uses reason for the triggers and then tries to avert the trigger with modifying our behavior. Example: Someone gets triggered with driving in high traffic. The answer is trying to lessen the stress, so one could drive at a time with less traffic, #2 prepare yourself before driving to form a strategy to lessen the stress, #3 sniff some lavender (actually, that one works great). #4 have someone else drive. etc etc.

Be creative, talk to yourself (which I do constantly) Pro Tip> Wear a Bluetooth headset in case someone catches you talking to yourself and tell them you are talking with a friend if they say something :>)

 

[LINE]

#2

I think we have to find our safe spaces and cannot expose ourselves to high stress environments. We have to know ourselves and what our boundaries are. We are not like the "normal" people and that is ok.

Self talk.

Knowing limitations

Good community

I like some Solfeggio or Binaural videos on YouTube with headphones. These are very helpful but you need to find the right ones for you and give it some time. Here are a couple of examples.


Here is a Solfeggio that might work for you

This is a Binaural that promotes sleep

This is one is not Solfeggio or Binaural but hypnotic which I find tones down my nervous system

Again, headphones help get the maximum. I will list some supplements that can tone the HPA in the next post.

 

[LINE]

It's designed to go over your head. With pseudoscientific BS babble. Fake explanation for real things. Yes the hypothalamus is real, no their explanation for how to 'fix' it is not.

Like Dr Gupta from Oxford, although I think he neglects to mention his doctorate is in philosophy if I recall. So if you have an acute philosophical poisoning, maybe he's the guy to see.

You can convince (brainwash) someone with a torn ligament that the pain isn't real. But if they keep pushing it, the damage is very real.

I can push through the beginnings of a crash - I did it many times. It often led to permanent declines.

Perfect explanation!

 

[Cfs2019]

Okay, I promised it, so here's the bit in the booklet they gave me about mind chatter etc and how to switch if off,,,

 

[Cfs2019]

Hopefully they're okay, I've not kept it that neat and tidy, so apologies for that, I was gonna type it up but it would have took me ages.

If I'm being honest I do have all those thought patterns and I was doing quite well for a short time but Its almost like I added another layer of stress and I crashed and this seemed to offend the practitioners who shut down on me, I tried to reach out to the owner and explain but it was difficult

Hopefully, some people on here may find it helpful

 

[Tammy]

It went over my head a little bit but I remember the first time I went, they showers a diagram of the hpa axis and talked about the hypothalamus being overactive. It was a big relief for me to hear that and I felt great for a short time, but the techniques or advice they gave me made me deteriorate.

Could you clarify? You mentioned it was a big relief for you to hear that and you felt great for a short time. Do you mean simply hearing the explanation gave you relief mentally perhaps that you had discovered an important piece of the puzzle and therefore because of that mental relief your body automatically felt better? This is before you actually applied any of the techniques of the program?

 

[hapl808]

If I'm being honest I do have all those thought patterns and I was doing quite well for a short time but Its almost like I added another layer of stress and I crashed and this seemed to offend the practitioners who shut down on me, I tried to reach out to the owner and explain but it was difficult

Again, the thought patterns may be real, but they're pseudoscientific approach is, to use a technical term, total bullshit.

If you 'wake up with your memory wiped' and you didn't know you had knee surgery two weeks ago, you would be able to do all the stuff without favoring your knee or doing any PT. Until, of course, you damaged your knee beyond repair by going to play football or basketball.

This idea that we have a preference or overly focused on symptoms is nonsense. For so many years I refused to read forums like this and just did my thing, constantly crashing and each time telling myself I was fighting off a cold and then going back to activity as soon as physically able. I spent zero time focusing on my symptoms unless they became unavoidable. This was a disastrous life ending mistake.

These programs do more harm than good. I can brainwash someone to believe almost anything if they want it badly enough, and many of these techniques look very similar to how brainwashing works.

Steve Jobs refused to buy into the sickness mindset and knew he could cure himself without the harms of modern medicine (which I understand his reluctance with how much harm they can cause). But he's still dead, no matter how well he avoided that sickness mindset.

Anyways, those pages look like a great way to break bad thought patterns. Much more competent and tested frameworks (like CBT) exist if you're having trouble with persistent thought patterns. However, this has close to nothing to do with ME/CFS, only how to cope with ME/CFS.

If you get HIV or cancer or ALS - these techniques might be helpful for coping. But even choosing a praising word with a thumbs up - you're still gonna have cancer.

As you may have determined, I despise these programs. And I tried it - because maybe I was wrong and it was the magic answer. It didn't harm me because I didn't push myself beyond my limits, but it did almost exactly zero for me. It was kind of nice to have a 'mantra' if I was thinking about some interactions with a friend too much or something - didn't do a thing for my physical symptoms. Still can't walk.

 

[Cfs2019]

Could you clarify? You mentioned it was a big relief for you to hear that and you felt great for a short time. Do you mean simply hearing the explanation gave you relief mentally perhaps that you had discovered an important piece of the puzzle and therefore because of that mental relief your body automatically felt better? This is before you actually applied any of the techniques of the program?

Yeah okay,

To be honest, just the explanation did lift my symptoms, at the time I was looking for viruses with a private doctor, doing pacing on the nhs, going on a candida diet and when they told me it was an overactive hypothalamus, i remember thinking 'oh shit yeah thats what it is' even before i got cfs i noticed my brain was always overactive i remember thinking ' i cant believe it took me so long to work this out' for an hour or two i felt great, but i tried to live a normal life and it was like they encouraged me not to be bored, but they less bored i was the worse my symptoms was, i crashed and they avoided me and blamed me

 

[Tammy]

@Cfs2019...............I actually find it very interesting that the brief relief of mindset also gave you relief of physical symptoms even if it was a short period of time. This is very telling to me.