My recovery from Chronic Fatigue and Autonomic Disregulation

[sueami]

I posted pretty heavily here for about a year from early 2014 to early 2015. I have now fully recovered from my five year battle with escalating chronic fatigue and other debilitating symptoms. I promised myself I would return and post my recovery story, because I knew how desperately I needed to read them when I was active here. Interestingly, there is no actual forum for recovery stories here. This seemed the best alternate place to post.

I wrote it up in a very long blog post. I apologize for the length. I remember how hard it was to read and process that much detail. But I felt it important to give a full accounting of my illness. I will probably make future posts on that blog detailing my particular path through Reverse Therapy, in case that helps anyone, but not just yet.

I won't be returning here -- the last time I posted that I was getting better, the response was pretty awful and I don't care to go through that again, or put anyone through the wasted effort of arguing with me over whether I could possibly really have had CFS or really have recovered. I just wanted to put another story out there of full recovery from this illness.

I wish every single one of you the same.

Sue

https://mychronicfatiguerecovery.wordpress.com/2015/10/22/first-blog-post/

 

[whodathunkit]

the last time I posted that I was getting better, the response was pretty awful and I don't care to go through that again, or put anyone through the wasted effort of arguing with me over whether I could possibly really have had CFS or really have recovered.

This is terrible that you feel inhibited from posting after all you've been through. I remember you telling about some of it when it was happening. But sadly, the pattern you describe is well recognized by many. It really needs to stop. We're all here for basically the same reasons, and the bickering over who's "legitimately" sick or what will and won't work in every single case shouldn't happen. We're all so different. We need different things. Nobody knows what actually causes most diagnosed cases of CFS and ME, and the cause in each individual could be as different as the individuals themselves. So how can anyone possibly know what may or may not affect recovery in every case? And if someone declares themselves recovered, how can people they've never even met to declare it not so?

Anyway...
@sueami, I wish you the best, sweetie. I've thought of you often and wondered why you weren't around. I'm so glad you're better. Peace and groovy vibes to you...

 

[Strawberry]

Ditto what whodathunkit says! Even though your CFS may differ from my CFS, it is a wastebasket diagnosis that may include a dozen or more separate things. No one should discriminate here!

Sue, thank you for providing the link to the pdf. I intend to read all 49 pages!

Oh and a ps., did you have the chronic sore throat also? Just curious.

 

[Maria1]

Thank you for sharing your recovery story. I think we all need to do what works for us individually and I would hope a forum like this should be a place where all members could feel safe to share their experiences. Goodness knows it's tough enough in the rest of the world.

I can't say much as my brain doesn't convert thoughts or sentiments into written words too well right now but all the very best to you

 

[drob31]

I think the concept is interesting, and everyone should consider it.

 

[jess100]

I'm sorry you received such a bad response to your posts about recovery. That kind of behavior should stop-and I see equally negative responses to other topics here-responses that shouldn't be posted. Some posters I've stopped reading all together because of their caustic personalities. Sorry you had to endure that.
It's kind of you to check back and to allow us to read your blog post. I wish you the best

 

[Research 1st]

My recovery from Chronic Fatigue and Autonomic Disregulation

Well the title is accurate, as chronic fatigue is a subjective experience, hence anyone can recover from it using any treatment they believe works. Vitamins, Counselling, CBT or standing on one leg.

The linked article mentions ANS dysregulation, but makes no mention of how this was diagnosed or even it it was confirmed. This is important for CFS sufferers to know (Dysautonomia is common in CFS, the POTS subset). POTS, like CFS is also incurable and can render sufferers bedridden and lead to many trips to ER with distressing cardiac symptoms including fits. POTS may be an autoimmune disease, and if proven, will be treated with powerful immune drugs that are years away from being offered. Naturally, a reader would be sceptical then or 'reversing' this with the power of the mind, as it would be a medically invalid claim.

People on this forum would rightly be irritated if someone joined and posted and said they were cured of CFS, as no cure exists known to medical science! Rather more importantly, there is no diagnostic test for CFS, thus until we know what CFS is, no one does recover, except from their experience of their illness. That doesn't mean it's 'our' illness.

Posting and then running away claiming a hardship (e.g. criticism), is not helpful as it means the person making claims never needs be present to answer questions! Thus a need to validate a persons recovery claims with questions using science, need never be met. As a result the 'recovery' story thus can bogus or be genuine.

For example I could claim I had MS and had POTS cured by drinking pure apple juice from organic Italian trees.
Now until I can prove I have POTS, and I can show a before and after effect of the apple juice, my claims are invalidated and thus irrelevant to other patients. Hence I wouldn't tell anyone, as it would be unfair to other sufferers who remain chronically ill.

Subsequently patients can be rightly irritated at this approach of some as effectively rubbing their nose in their own incurable disability, claiming a treatment is there, but then failing for this treatment to meet any scientific scrutiny. Hence the conclusion of this, is it's bogus. This is how science works, and science is the religion of medicine.

However, as CFS (at the time of diagnosis) is a self reported unexplained chronic fatigue state it means nothing to 'recover' from CFS (as it never need exist at time of diagnosis medically) and thus it doesn't matter what people say or believe in terms of posting messages about claims to a recovery, regarding CFS.

On that basis, recovery stories are no more than that, stories. If people feel better, fantastic, but these tales are not useful to other patients unless we have a variable we can measure ourselves:

E.g. Pathogens, blood flows, inflammation. Otherwise, these stories people post are just personal victories, others cannot join in with, and others cannot win. Thus, they annoy people who have no treatment options, as CFS is an incurable organic syndrome.

Personally I would never have the gall to post a recovery story, for a serious medical disease that has no treatment options, unless I had a whole bunch of blood tests and other medical tests to back up my before and after effect as it wouldn't be fair on other people to upset them, even if this never was the intention and I'm sure it wasn't.

This phenomena also used to happen in AIDS, and still does with cancer. People can forget that personal ideas of treatment if being 'suggested' to others, really do need to be based on hard fact when sharing these ideas with a serious medical condition, which can but not always, be inside the CFS.

 

[SOC]

Why is anyone surprised that someone claiming to be cured of chronic fatigue (not ME, you'll notice) using a psychotherapy technique (Reverse Therapy -- a relative of Mickel Therapy and the Lightning Process) was not greeted with parties and parades?

Legitimate questions are certainly in order and should not be considered harrassment... unless you're BPS school, in which case any legitimate questions are automatically labeled harrassment because that's the way BPS rolls.

I'm happy for anyone who finds a way to improve their life. That doesn't mean it applies in any way to me or to ME.

 

[sillysocks84]

I think you are brave to post here. It's highly unlikely you'd take the time to write such a long winded account to be lying. I'm glad you took the time to include me. I'm thankful. I can take any suggestions even if they're unlikely to work out for me. When I do recover because I believe it's possible, I won't post here. I'm not this brave.

 

[Vic]

Well... so far I've just done a quick skimming of the Reverse Therapy. In my experience the whole not giving a shit about what other people think or want of you does play a part in recovering, and from what I've seen it can definitely be a root cause in many peoples' cases, despite it not being specific. It's basically a way to reduce stress.

The other thing it says is to take times to feel your body out in order to determine what it "needs" or "wants" to do at any moment. THAT, from my experience, is one of the necessary ingredients to recover if you're going to do it on your own. Everyone with CFS/ME has odd sensations running throughout their body. Air hunger, chest pain, hip pain, shoulder pain, back pain, neck tension, tingling, numbness, itching, muscle twitching, etc. These aren't just random symptoms that appear and disappear for no apparent reason. They're the body speaking to what the Reverse Therapy method refers to as your "Headmind." They basically teach that the "Headmind" keeps the body in a state of "dis-ease," and urges people to get out of their heads and into their bodies, so to speak (Bodymind). Yeah that's certainly part of recovery, but it doesn't really get at the root cause or what CFS/ME/FM actually are.

My general impression of it is it's a CBT way of reducing stress, but particularly the stress we inflict on ourselves with our "headminds" and the inactivity we impose on ourselves. It's about getting better in touch with what our body needs activity-wise, which can of course help.

 

[Dr.Patient]

Why is anyone surprised that someone claiming to be cured of chronic fatigue (not ME, you'll notice) using a psychotherapy technique (Reverse Therapy -- a relative of Mickel Therapy and the Lightning Process) was not greeted with parties and parades?

Legitimate questions are certainly in order and should not be considered harrassment... unless you're BPS school, in which case any legitimate questions are automatically labeled harrassment because that's the way BPS rolls.

I'm happy for anyone who finds a way to improve their life. That doesn't mean it applies in any way to me or to ME.

What is BPS, thanks

 

[SOC]

I would have no problem posting here if I completely recovered. I wouldn't mind answering questions. I don't see what the problem is.

A legitimate therapy stands up to questions. If I felt that I had recovered via some means that wouldn't stand up to logical questioning, such as praying to the Flying Spaghetti Monster or swimming in Lake Michigan at 11:57 on the night of a full moon, I wouldn't claim my method was a cure for ME. I would simply say that I did this, now I'm recovered, but since correlation is not causation, I can't say whether my technique is or is not the reason for my recovery. Even if I recovered using treatments that are logically and scientifically sound, I wouldn't claim I had a cure for ME. It's clear to all of us that there isn't A Cure yet, just some treatments that help some people to varying degrees.

My daughter has gone from not being able to finish a semester at college to fully functional. I have willingly reported this and answered questions about it. I have not been so arrogant as to suggest that we have found a cure, or even a treatment that will work consistently for PWME.

But maybe I'm not afraid to talk about recovery because I'd never consider suggesting to the very sick people here at PR that recovering from ME is about changing the way they think about their illness.

 

[Mij]

I think you are brave to post here. It's highly unlikely you'd take the time to write such a long winded account to be lying.

I don't think anyone here is accusing anyone of lying about their illness and recovering.

 

[Research 1st]

What is BPS, thanks

BPS = Bio Psycho Social theory of CFS.

It is based in psychiatry. The patient develops abnormal beliefs, keeping them disabled. By challenging the beliefs with mental health therapies (CBT) and a modality t do more (GET) the patient regains their health.

This was debunked massively, in critique of the PACE trial, and of course from day one as there are no objective measures (science) to measure the effectiveness of BPS theory CFS. Hence BPS theory of CFS, failed to treat CFS.

 

[Research 1st]

I would have no problem posting here if I completely recovered. I wouldn't mind answering questions. I don't see what the problem is.

A legitimate therapy stands up to questions. If I felt that I had recovered via some means that wouldn't stand up to logical questioning, such as praying to the Flying Spaghetti Monster or swimming in Lake Michigan at 11:57 on the night of a full moon, I wouldn't claim my method was a cure for ME. I would simply say that I did this, now I'm recovered, but since correlation is not causation, I can't say whether my technique is or is not the reason for my recovery. Even if I recovered using treatments that are logically and scientifically sound, I wouldn't claim I had a cure for ME. It's clear to all of us that there isn't A Cure yet, just some treatments that help some people to varying degrees.

My daughter has gone from not being able to finish a semester at college to fully functional. I have willingly reported this and answered questions about it. I have not been so arrogant as to suggest that we have found a cure, or even a treatment that will work consistently for PWME.

But maybe I'm not afraid to talk about recovery because I'd never consider suggesting to the very sick people here at PR that recovering from ME is about changing the way they think about their illness.

Exactly you hit the nail on the head SOC.

If a patient recovered by having antivirals, ampligen, curing a heart defect or a mold infection, then great as we know these are 'part' of CFS sufferers ailments, and indeed, research evidence.

But what we also know from research, is 'the mind' is not keeping us ill and to suggest it is or defend people who do, is quite a mental leap of faith (ironically).

 

[Dufresne]

Congrats @sueami! And thanks very much for posting. I think toning down an overly sympathetic ANS is likely a big part of recovery, whether it be by removing the stressors, or through modifying the way we respond to the stress, or some combination of the two.

Personally I find those asking for scientific validation for every little alternative therapy to be far peskier than those claiming to be cured by the Lightening Process, or whatever. There are no recognized treatments for ME/CFS, so either you take the bull by the horns and try to figure out what works for you, or you put your hands together and pray for the scientists save you.

 

[ahmo]

@sueami, I wish you the best, sweetie. I've thought of you often and wondered why you weren't around. I'm so glad you're better. Peace and groovy vibes to you...

Ditto

 

[Hip]

CFS is an incurable organic syndrome.

Research has shown 28% of ME/CFS patients go back to work after a decade with mononucleosis-triggered ME/CFS, and 13% report they are fully recovered after a decade.

It's possible that enterovirus-associated ME/CFS may be harder to recover from (we don't have the data for this particular virus), but nevertheless, suggesting that you can never recover from ME/CFS contradicts what we know.

Rather more importantly, there is no diagnostic test for CFS, thus until we know what CFS is, no one does recover, except from their experience of their illness.

Personally I would never have the gall to post a recovery story, for a serious medical disease that has no treatment options, unless I had a whole bunch of blood tests and other medical tests to back up my before and after effect as it wouldn't be fair on other people to upset them, even if this never was the intention and I'm sure it wasn't.

Aren't you being somewhat contradictory in the above two posts? In the first you point out there is no diagnostic test for CFS, but then in the second post you say you would not have the gall to write a recovery story unless you had a whole bunch of medical tests before and after your recovery!

In my experience the whole not giving a shit about what other people think or want of you does play a part in recovering, and from what I've seen it can definitely be a root cause in many peoples' cases, despite it not being specific. It's basically a way to reduce stress.

That could well be the reason why sueami does not want to hang around and see all the acrimonious responses to her recovery story; it might cause stress and then have a negative health effect.

Given the evidence for a possible autoimmune etiology of ME/CFS, this article on the connection between stress and autoimmunity may have some relevance: BGU Researchers: Stress Can Lead to Autoimmune Disease

 

[Martial]

One thing I have noticed in dealing with my lyme disease, is that stress and feelings of anxiety or dread rather then spiking my heart rate and sending me into a panic like state is instead a severe worsening of a lot of my exiting symptoms.

Feeling way more exhausted after due to issues with emotional blocks or some kind of weird de personalization thing I have which blocks access to my emotions. Instead it makes me feel a lot worse when I am all of a sudden overwhelmed with them at times.

I had anxiety issues before I got sick but emotional turmoil now also seems to compound into a worsening of my lyme condition on top of the physiological changes the sympathetic nervous system does to the body. Anyways I guess my point here is that although treating the emotional aspect might not cure all people, or necessitate anything in relation to M.E. cases specifically.

But It definitely helps to work through our emotions and turn up those blockages that trauma, or emotional distress can cause. In the least it makes us more resilient and better able to cope with chronic illness, and the reduction in stress is nothing but beneficial no matter what condition you are dealing with.

My friend actually reversed his psioratic arthritis, Type II bi polar, and M.S. using meditation, yoga, and spirituality, which he claimed lead to a spiritual kundalini healing and a full remission of all his symptoms, he weaned off all his meds and has been in remission since 2009. Regardless of what other people think or how he did it.

He is out living his life now and no longer deals with his old chronic "incurable" health issues of over twenty years and that is awesome! He wrote a book called I Don't Dwell, and talks about his conditions and overcoming them, and now travels doing public speeches about his healing, and mindfulness as well as writes as a successful author.

The issue comes in with doctors claiming CBT and psychotherapy being a cure all and root cause for "unknown" chronic health conditions, which reduces proper funding, research, and understanding and support from our social network and government around us.

So happy and inspired from you Sue! I am glad to hear you are doing so well now, and from reading your blog you definitely suffered a lot! It is great you found something that has helped you and that you can live a normal life again!

 

[Hip]

Anyways I guess my point here is that although treating the emotional aspect might not cure all people, or necessitate anything in relation to M.E. cases specifically.

For me personally, I don't feel there is any stress component to my ME/CFS, and thus have little inclination to try out one of these psychological therapies like the Lightning Process, etc (though I could be wrong, and maybe there is hidden stress deep in my mind that I am unaware of).

However it seems to me that these stories of psychological therapy-induced recovery do appear from time to time, and it suggests that in a small minority of patients, de-stressing may be the key to improved health.

But don't let us pretend that this is the answer for the majority of us. And I certainly don't think CBT will help either, as this is not a de-stressing therapy.