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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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My recovery story, in case anyone is interested

Snowdrop

Rebel without a biscuit
Messages
2,933
My individual belief is that MY illness is my body giving up after too many physical AND psychological stressors,

Possibly you misunderstand some of those who propose a biological model only.
Psychological anything arises from the body. There is no psychological phenomena without physical underpinnings.
In other words, you feel stressed by your job, relationship or whatever? Some people would not see it as stress by would thrive on it or at the very least be resilient to it. Why? Yes, some of it is coping style, but coping can and is learned by anyone.
It's because we have certain vulnerabilities in the chemical pathways of our body that particular psychological stressors affect us as they do.

I don't think anyone is suggesting that things like meditation, breathing, relaxation and trying to keep a positive attitude are not helpful and many who think about ME as above use such tools to help them with this illness.

There are Psychological schools out there that as you probably know want to offer only psychological treatments (they're cheap and easy)
for this biological illness. While they are having to give way to the idea that ME just might be physical in origin they continue to insist that it is the PWME who perpetuates the illness because of false illness beliefs and because we don't deal well with stress (as in we have poor coping skills). That psychology is the problem.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Trying to find a solution on the psychological side of things was the first thing I tried. After years I had to admit that it didn't serve me well, wasted my time, created unrealistic expectations and contributed to depression. Nowadays I'm very critical since a lot of claims are being made in this area that cannot be verified in any way. It's a belief system that is attractive because it gives the illusion of being able to explain and understand everything that science fails to explain.

So much for the "refusing to even explore psychological aspects" part. I think I explored this area of my life very well - I just came to conclusions that not everybody likes.

I had an open mind for many years, and in a way still do. Even a few years ago I still sometimes doubted myself, and asked myself "Am I really trying hard enough?" But after doing this many many times and for a very long time, I think I am finally convinced. Yes - I am - and was - trying hard enough. It is not, and has never been, a lack of motivation or effort that has kept me ill.

I am still open to the possibility of stress being involved in initial causation, which I know that some are not. The mind does influence the body, just as the body influences the mind, and our microbiome influences both as well.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
And the illusion of control of course. If some cognitive and behavioral changes are all that is needed to avoid indefinite illness with severity disability, then people can feel secure in their ability to recover from or avoid illness. The world becomes safe again, right as things were starting to look a bit random and uncertain :rolleyes:

OCD and superstition operate on the same principles - the illusion of control. If you do this and that in this way or that order, things will go right.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
I am still open to the possibility of stress being involved in initial causation,

Again, the point is: whatever stress that you experienced there would be someone who endures the same stress but with much more resilience and therefore their stress does not play a part in succumbing to illness. It's not the stress per se (which we all experience to varying degrees) but the physiological response to that moment of stress where our body cannot cope and does not support us and behave with resilience. This would include 'mental' coping strategies. If you are physically run down you cannot apply with any vigour the mental coping strategies you possess.
So stress as having a role in disease is about the resilience and functioning of the body first.
 
Messages
52
I would just like to clarify. I do not believe you can cure yourself with just a psychology aspect... but yes I said it wrong when I said that most people deny a psychological aspect to their illness. It's just something I did then. I think it is completely the wrong way around to be ill and seek psychological help for your illness... that's quite ridiculous. all I'm saying is just talk to somebody! don't go it alone. It has benefits.

But yeah, we're all different. all I can share is how I got better after suffering and being bound to a lifeless life in my house for 7-8 years. someone mentioned whether or not I got better just because of a natural progression. I can't stand when people say shit like that. It's like when you tell people X Y Z caused my acne! "I think it's just because your are age X... it's the magic age number and everything disappears!". you don't just randomly overcome something like this. it took a year of dedication to get where I am now. If i had not done everything I have done I would still be ill.

not sure what else I can say really other than good luck
 

Apple

Senior Member
Messages
217
Location
UK
Hi @james7a - I'm not able to read or take in anything from this thread right now (or watch the videos) as I've just had a hospital appointment and am completely wiped, but i read the first page and noticed that you had the TB jab (BCG?) in 2004 and felt worse after it. I also had the BGC in 2004 at school and looking back, my problems seemed to start around that time. It wasn't until I completely crashed in November 2004 after glandular fever that I was diagnosed with ME/CFS in early 2005. But there were definite symptoms (weakness, brain fog, nausea etc) all that year. I wonder if we got a bad batch? Are you located in the SouthWest at all?

Anyway I will try and read the thread over the next few days and respond properly. I'm really happy for you that you've found something that has helped you. Long may it continue!

Edited to add: I became sick in 2005, not 2015. >_<
 
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Messages
52
Hi @james7a - I'm not able to read or take in anything from this thread right now (or watch the videos) as I've just had a hospital appointment and am completely wiped, but i read the first page and noticed that you had the TB jab (BCG?) in 2004 and felt worse after it. I also had the BGC in 2004 at school and looking back, my problems seemed to start around that time. It wasn't until I completely crashed in November 2004 after glandular fever that I was diagnosed with ME/CFS in early 2015. But there were definite symptoms (weakness, brain fog, nausea etc) all that year. I wonder if we got a bad batch? Are you located in the SouthWest at all?

Anyway I will try and read the thread over the next few days and respond properly. I'm really happy for you that you've found something that has helped you. Long may it continue!

same here. I felt awful after my BGC jab. after every other jab i didn't feel any different. after BGC I felt very strange and like you said.. i felt very weak and sick. My dad also had glandular fever so maybe there was a suspect-ability to it for me.

Oh yeah, and they no longer do the BGC jab as it is seen as unnecessary.. pretty typical right? i think we were some of the last people to get this useless jab. (2004 for me aswell) I'm located in Newbury. I have read alot of people with CFS having the same jab. who knows what it could of done.

Good luck to you apple!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Again, the point is: whatever stress that you experienced there would be someone who endures the same stress but with much more resilience and therefore their stress does not play a part in succumbing to illness. It's not the stress per se (which we all experience to varying degrees) but the physiological response to that moment of stress where our body cannot cope and does not support us and behave with resilience. This would include 'mental' coping strategies. If you are physically run down you cannot apply with any vigour the mental coping strategies you possess.
So stress as having a role in disease is about the resilience and functioning of the body first.

I'm talking about chronic stress rather than moments of stress. And I'm not saying that it is involved in the causation of all cases of ME - just some. In my case it was from childhood, and may have even started in the womb. Childhood was stressful, emotionally unsupported, lonely, fearful and miserable. Childhood is when the brain is maturing, so I think that chronic childhood stress is sure to lead to adverse patterns of brain activity in adulthood.

I know that psychological research tends to be of particularly poor quality, and don't know if there is any really good, objective research on this issue in humans, but it just seems instinctively obvious to me.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
same here. I felt awful after my BGC jab. after every other jab i didn't feel any different. after BGC I felt very strange and like you said.. i felt very weak and sick. My dad also had glandular fever so maybe there was a suspect-ability to it for me.

Oh yeah, and they no longer do the BGC jab as it is seen as unnecessary.. pretty typical right? i think we were some of the last people to get this useless jab. (2004 for me aswell) I'm located in Newbury. I have read alot of people with CFS having the same jab. who knows what it could of done.

What age were people when they had BCG? I ask because I developed severe gut problems around age 11 (around 1964), and have had gut problems on and off ever since. I know that I had BCG at secondary school but don't know what year.
 

Apple

Senior Member
Messages
217
Location
UK
@MeSci I believe it was march/apr/may of year 9 for me. I found my school diary with the date in it a few months back. I was 14, others in my year may have been 13. I started getting bad nausea when I was 14 and had pretty severe gut problems (I weighed 6st at my worst - BMI of 14.9) from 15/16.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci I believe it was march/apr/may of year 9 for me. I found my school diary with the date in it a few months back. I was 14, others in my year may have been 13. I started getting bad nausea when I was 14 and had pretty severe gut problems (I weighed 6st at my worst - BMI of 14.9) from 15/16.

It may have been around that age with me too. Trouble is, all my childhood medical records apart from a couple of doctors' letters have vanished. At least they are not in the records I have been given. It's so frustrating.
 

Wayne

Senior Member
Messages
4,301
Location
Ashland, Oregon
Just to briefly mention, I became very ill from a vaccination (polio I believe) while in grade school, around 12-13. I wondered for months if I would ever get better. I finally did, but believe to this day this played a pivotal role in my later on developing ME/CFS.
 

mermaid

Senior Member
Messages
714
Location
UK
I'm talking about chronic stress rather than moments of stress. And I'm not saying that it is involved in the causation of all cases of ME - just some. In my case it was from childhood, and may have even started in the womb. Childhood was stressful, emotionally unsupported, lonely, fearful and miserable. Childhood is when the brain is maturing, so I think that chronic childhood stress is sure to lead to adverse patterns of brain activity in adulthood.

I know that psychological research tends to be of particularly poor quality, and don't know if there is any really good, objective research on this issue in humans, but it just seems instinctively obvious to me.

I read a book by Sue Gerhardt a couple of years ago, called Why Love Matters which looks at recent neurological research to back up what she is writing. It talks about the importance of the very early months of a baby's life with regard to vital brain development and how the earliest relationship shapes the nervous system. She shows how 'specific early 'pathways' can affect the way we respond to stress'. There is plenty of research quoted in the book.

I suspect that some of my adult problems come from my early months when I now know my mother was extremely mentally ill, but felt unable to ask for help (she had OCD in fact). Actually she didn't get treatment until I was 6, and so would have been very stressed herself. Then when she did get help I ended up having to go to an aunt to live for quite long periods, which was further stress for me, and I know I was wetting the bed at the time.

In spite of this I managed quite well (though I did have anxiety and chronic mild depression for years), until my early 40s when I got my first autoimmune condition. Of course I guess it could have been stress that helped to trigger that too, as at the time my husband was suicidally ill, and I was working in a new job which I did not find easy. After that time I had chronic stress for many many years.

I didn't consider that I had ME proper for another 10 years, though I can see the trail that led to it, and it took a very long time for me to deteriorate enough to have that label. Before that point the stress levels increased even more with cumulative family stresses that impacted on me.
 

mermaid

Senior Member
Messages
714
Location
UK
That doesn't mean I don't think there are other vulnerablilities - after all, I had EBV when I was 13 and had a lot of illness as a child, including pneumonia at aged 6, though I guess the stress when I was a baby/young child could have added to that susceptibility. Also there are the genetic weaknesses too that I do not know of.I was pretty healthy in my 20s and 30s though!
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
That doesn't mean I don't think there are other vulnerablilities - after all, I had EBV when I was 13 and had a lot of illness as a child, including pneumonia at aged 6, though I guess the stress when I was a baby/young child could have added to that susceptibility. Also there are the genetic weaknesses too that I do not know of.I was pretty healthy in my 20s and 30s though!

IIRC, almost everyone has had EBV, so that on its own can't be a factor. The 'chronic stress weakening the immune system' PLUS particular infections seems more likely, but some are very sceptical about that.
 
Messages
296
I was reading some of your initial posts on this thread.....
First of all, congratulations for getting to where you are now and healing! You are pure awesomesauce.

You seem to have a very balanced approach about disease and lifestyle. I like it!

Fixing diet, cutting out gluten, sugar and commercial dairy didn't fix everything for me. I have a lot of underlying infections I suspect so that sort of intervention alone won't always help a high percentage of CFS sufferers....Not many of us even have the same symptoms so everyone needs their own individualized protocol and to work with a very experience integrative/functional medicine practitioner or MD. Use the best of both worlds!

And of course, add in some stress reduction therapies, tapping, meditation, yoga (I recently was lucky enough to attend a yoga workshop on physical and emotional trauma) etc Also, changing one's response/reaction to the pain or stress can be very helpful.

I had a great diet and all of these therapies but not much changed, to be honest...I believe I need something far more.

Raw Veganism almost killed me, I was raised as a Vegan (half Indian here) and if that's the cure...then I should have been cured, right?....

Eating meat and dairy (grass-fed and from a clean source, esp raw) helped me loads. I cannot get it right now so all I eat nowadays is fruit, vegetables (both raw and cooked), smoothies, juices with some herbs, chicken, beef, stocks/broths (I can even tolerate gluten sometimes with stocks and broths), lentils.... Rice gives me the worst reactions, even far worse than Gluten.


Lastly, aren't kefir, yogurt, organ meats and other fermented grass-fed dairy/animal products beneficial? Of course, it depends on who is asking the question but many indigenous tribes consume these alone and some solely thrive on these foods and have a long life-span. There hasn't been a culture so far that has thrived on Veganism or Raw Veganism alone so far....Hmm....
 
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mermaid

Senior Member
Messages
714
Location
UK
IIRC, almost everyone has had EBV, so that on its own can't be a factor.

I had read something about most people having been infected with EBV in the U.S. but I find it difficult to believe that means that all of those people have had full blown EBV, and you would certainly know about it if you did! Maybe that makes a difference.

I remember being really ill with it at aged 13 and they were actually going to take me to the isolation hospital (this was 1965 and it's difficult to believe they existed now). They took a throat swab and identified EBV from the swab. I had 6 weeks off school and the first few weeks were dreadful - I had a raging throat, and was so weak and ill I could not get out of bed without my mother's help. We had no bathroom upstairs and I was too weak to go down so I had to use a chamber pot, and have my mother wash me in the bed.

There was only one other person that I knew of who had glandular fever (EBV) at school and she also had a lot of time off. I do not know anyone else in my family who had EBV so if all these people have had it then it must be a pretty mild affair.
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Hi @MeSci

I meant to respond to your earlier post which I read but my daughter is visiting and I've been way to busy and didn't trust that I could collect my thoughts at the time.

I don't disagree at all that chronic stress is different in nature to stressful moments. How this would affect ME is of course not fully understood like so much else. So my opinion, and that's all it is, is that the issue of physical causality is still valid. It's not the chronic stress per se that causes one to fall ill. But I might guess that it certainly ups the possibility by interacting with the body.

To (try) to clarify: There are still people who amasingly can come out of things like torture and other truly horrific traumas and they heal.
Their mind heals there body heals they are the olympic champions of robust resilience to stress.
But as the amount of stress increases it becomes increasingly likely that it will surpass our level of ability to cope and then we are left in a situation where our bodies are trying to deal with stress. The interplay is between mind and body but I see mind as arising from the body.

When the body has a level of stress beyond coping things start to go wrong over the long term.
I admit this theoretical framework is a thing I do harp on (OK one of the things :redface:) but it's because of the abuse I see that the stress concept can be put to when it seen to be primary. I don't that my thinking on the subject is purely informed by that alternative.

Most recently PDW has accused the ME community of being dualist. It is completely (as expected of PDW) disingenuous because it sounds like a valid point only so long as you don't examine the meaning. And as it's not something most people think about on any given day (Am I a dualist?). Actually, what I suggest above would make me a monist. The only question then is which gives rise to the other.
Does mind give rise to the physical or vsv.
I will now not post more here as I've badly hijacked the thread.
If I get the energy I my post a new thread on the topic of dualism/monism.
 

cmt12

Senior Member
Messages
166
Snowdrop, you see it like this:

physical --> psych

which I agree with except I would add another layer of depth:

physical --> psych
\\ //
\\ //
Mind

The problems and frustrations many patients have seem to stem from psychologists who see it like:

psych --> physical