Which theoretical cause of CFS/ME do you believe to be true?

[ash0787]

I don't think its caused by a pathogen or digestive system problem or neurological or chemicals, radio waves etc

 

[anniekim]

I swing between going on ME forums and going on thyroid forums as I was diagnosed with underactive thyroid long before I got the CFS/ME diagnosis (as they called it). The thyroid 'camp' do not believe in CFS but think it's a badly managed thyroid and adrenals. I am beginning to think that the thyroid lot may be right in my case. I seem to have pretty well fixed some of the worst symptoms re my gut (or managing it well at any rate), and my dysfunctional immune system (herbalist seems to have fixed this). Just that has taken about 6 years.

Now I am working on my thyroid and adrenals again in the hope that will fix my remaining symptoms which are now reduced to frequent migraine aura and lack of stamina, which can fluctuate depending on all kinds of factors. Maybe if you have Hashimoto's (which I assume is what I have, but no one in the UK ever calls it that or checks the antibodies), for over 20 years, then things are never going to be quite 'fixed', just improved hopefully for me by the time I have finshed.

That doesn't stop me believing that ME can be something else though. Clearly it is for some people.

@mermaid You can get your antibodies to thyroid tested privately here in U.K. https://www.medichecks.com/thyroid-function-tests/thyroid-check-plus

 

[mermaid]

Thank you @anniekim That's a very reasonable price! I will definitely consider that one.

 

[anniekim]

@mermaid Great I take T4 and T3, helped initial years of M.E 18 years ago. Don't have antibodies. However, now severe and been bedridden last four years. Dr M's views on thyroid in CFS may be of interest.

http://drmyhill.co.uk/wiki/Thyroid_profile:_free_T3,_free_T4_and_TSH

"There are three common ways in which there may be inadequte amounts of the thyroid hormone for normal metabolism. The one which all doctors are aware of is primary hypothyroidism, in which there is a raised TSH and a low T4 and low T3. This is due to failure of the thyroid gland itself, possibly due to autoantibody disease, possibly due to toxic stress or possibly due to iodine deficiency.

The second, and in my view the most common cause of thyroid failure, occurs at the pituitary level. In this condition there is inadequate thyroid stimulating hormone (TSH) produced from the pituitary and so one tends to see low or normal TSHs, low T4s and variable T3s. This condition I see most commonly in my patients with chronic fatigue syndrome, where there is a general suppression of the hypothalamic-pituitary-adrenal axis.

The third type of under-functioning is due to poor conversion of T4 to T3. This requires enzymes and co-factors, in particular selenium, zinc and iron. In this condition there are normal or possibly slightly raised levels of TSH, normal levels of T4 but low levels of T3. This requires micronutrients and also T3 to correct."

Also this article http://drmyhill.co.uk/wiki/Hypothyroidism_-_A_Common_Hormonal_Problem_in_CFS

 

[mermaid]

Thank you @anniekim, and I am so sorry to hear how severely ill you are. I know how difficult that must be in the UK with very little decent support. Do you have help from Dr Myhill? I have had some treatment from her in the past, although not for the thyroid as I was able to sort that out myself.

Thank you for that link to her page. She has so much info on her site and I have often read bits but it's good to read again, and she constantly revises them too!

Looking at those 3 it's clear that I do have the primary thyroid failure as I was diagnosed with such from my TSH levels and FT4 some 20+ years ago. However I guess things can change over the years, and I suspect strongly that i now have problems with No.3 as well re the conversion issues. At any rate after the first few years, I did badly on T4 only and gained a lot of weight. I think things changed after I went through the menopause. I am on NDT now and need to take 4 grains which is quite a big amount considering I was only on 100mcg of T4 some 4 years ago (before I went onto T3 only for 4 years). If I take less than 4 grains then I feel dreadful, although I am also addressing the low cortisol issue too.

 

[Basilico]

One of the reasons why I don't think CFS is simply due to a virus or bacterial infection is that many of the infections hypothesized to be responsible are incredibly common and clearly everyone who gets these infections doesn't then develop CFS. Most people have antibodies against EBV and many other pathogens, yet never went on to develop CFS. I think it's possible that one or more pathogenic infections could be involved, but I don't think that's the cause. And if for some people a viral and/or bacterial infection is a key player, then there must also be some kind of disregulation of the immune system, because their bodies are not either defeating or coping with the infection in the way that non-CFS people are.

I believe that the human race is in the process of adapting to an onslaught of recent changes in our world, from the changes in quality of mass-produced food, radiation, pollution, increase in world travel (and therefore increased mobility of pathogens), chemicals, etc... some humans are doing well in adapting to this changing world, whether it's by naturally upregulating their glutathione/antioxidant production or by more efficient elimination of heavy metals, etc.. and some of us are getting left behind because our bodies are less efficient at this.

In the long run, survival of the fittest will benefit the species at large, but it's awful for those of us who are the sickest. While I believe that there is definitely room for improvement and I will not stop looking for ways to feel better, I also think that ultimately many of us have bodies that just don't work quite right and had we been born even 100-200 years ago, many of us probably would not have survived as long into adulthood as we have (I certainly would not have made it past childhood, and perhaps objectively I shouldn't have). Maybe the fact that previous generations had a much higher infant and overall mortality rate, while devastating for individuals, was actually a positive thing for the species overall, because this allowed the people with superior immune systems and overall health to survive and procreate while those who were less vigorous didn't. (Obviously there were some exceptions)

From a subjective point of view, I'm glad that antibiotics and other treatments exist, but from an objective view, I actually think most of modern medicine has actually been responsible for our collective decline because it has allowed people (myself and those I love included) with far inferior health to survive when from a health standpoint we shouldn't have.

 

[Stretched]

IMO, stress (as equal to being awakened with a Black Mamba in your face) is at the root of the autonomic Nervous System having changed its otherwise ordinary functions.
No viruses have been biomarked, just hinted at then disproven in small and large scale studies over the last 35 years... .

 

[Basilico]

IMO, stress (as equal to being awakened with a Black Mamba in your face) is at the root of the autonomic Nervous System having changed its otherwise ordinary functions.
No viruses have been biomarked, just hinted at then disproven in small and large scale studies over the last 35 years... .

There is a big difference between a short-term acute moment of stress (your Black Mamba example) and chronic stress (chronically overworked and underpaid, in an unhappy relationship, etc...). Humans are designed to deal with acute stress (and in fact, I think we actually need it periodically) but we are not designed to live with chronic stress.

I know for a fact that chronic stress has many long-reaching negative implications for health. However, many, many, many people (I would say the vast majority) of modern people are living with chronic stress, and yet most of them never develop CFS. My father, for example, grew up in an extremely abusive household, was a soldier in Vietnam, worked 80-90 hour workweeks for most of his life in high stakes positions at multimillion dollar companies, smoked 3 packs of cigarettes a day at his worst, 10-12 alcoholic drinks per day, balanced out by 10-15 cups of coffee, no exercise...I really couldn't envision a more stressful life than his if I tried. Sure, he had a heart attack at age 45, but he never developed CFS. And even now in his seventies, he's extremely out of shape but his ANS is just fine and he is still more functional than either my husband or I.

 

[GodGenghis]

My theory:

The first mover is some kind of trauma (Emotional, physical, infectious, toxic, nutrient deprivation) --> Causing epigenetic changes --> Causing immune cells to go wonky --> Causing the production of autoantibodies --> Causing disruptions in energy metabolism and the engagement of Naviaux's Cell Danger Response --> Causing all the other observed downstream issues in ME including gut dysfunction, ANS dysfunction, Endocrine dysfunction, etc

Thoughts?

 

[Little Bluestem]

While I put “A combination of the above”, I actually think it is a combination of metabolic dysfunction, autonomic nervous system dysfunction (below), and endocrine system dysfunction (not listed).

 

[Wishful]

I chose metabolic, since my latest guess is genetic defect in microglial mitochondria, but immune system feedback is involved. My disorder started with a type IV food sensitivity. I stopped the t-cell reaction, but my microglia seemed to be stuck in a feedback loop by then.

 

[anniekim]

Sorry @mermaid it has taken me so long to reply. I have had a few weeks where typing increased my nerve pain too much and so couldn't respond until now.

I did consult with Dr myhill many years ago but not to do with thyroid. I know some have been helped by Dr Myhill but she gave me some advice that I think plunged me into very severe M.E. I am also not someone who finds her diet advice easy so have never followed it strictly so I have not consulted with her for a very long time.

I saw the late Dr Skinner for my thyroid when I first got ill eighteen years ago and he put me on armour thyroid which I took for a few years and then I switched to T4-T3 combo. My T4 was within range when he put me on it but only just. I know most GP would not have prescribed. I still became bedridden eventually on armour thyroid. The NHS consultant at my nearest CFS clinic visited me at home once when at my worse, a one off, and as my blood cortisol was very low he put me on ten mg hydrocortisone. So I think my M.E probably affected my thyroid but it is only a small part of the picture of my illness.

 

[Manganus]

My own pet theory (based on only partial understanding of the latest discoveries, granted) is that an initial infection or other insult prompts the immune system to release antibodies, which end up mistakenly attacking the membrane of mitochondria within the cell, leading to disruptions in energy production.

So far, I concur.

I'm basing this chiefly on my own, and my family members', history. Although only one grandparent had an autoimmune diagnosis, there are more of such in succeeding and preceding generations. And autoimmune reactions was my first idea back when one of my earliest symptoms was recurrent muscle pain (myalgia) the days after walking and biking. (I'm no way sure of that theory. Nor can I dismiss it.)

As another pet theory, I wonder if disturbances in the Autonomic Nervous System may be due to antibodies taking cell surface receptors for something foreign.

In addition, I quote Basilico, with whom I here agree.

One of the reasons why I don't think CFS is simply due to a virus or bacterial infection is that many of the infections hypothesized to be responsible are incredibly common and clearly everyone who gets these infections doesn't then develop CFS.

In the long run, survival of the fittest will benefit the species at large, but it's awful for those of us who are the sickest. While I believe that there is definitely room for improvement and I will not stop looking for ways to feel better, I also think that ultimately many of us have bodies that just don't work quite right and had we been born even 100-200 years ago, many of us probably would not have survived as long into adulthood as we have (I certainly would not have made it past childhood, and perhaps objectively I shouldn't have). Maybe the fact that previous generations had a much higher infant and overall mortality rate, while devastating for individuals, was actually a positive thing for the species overall, because this allowed the people with superior immune systems and overall health to survive and procreate while those who were less vigorous didn't. (Obviously there were some exceptions)

From a subjective point of view, I'm glad that antibiotics and other treatments exist, but from an objective view, I actually think most of modern medicine has actually been responsible for our collective decline because it has allowed people (myself and those I love included) with far inferior health to survive when from a health standpoint we shouldn't have.

 

[Manganus]

My theory:

The first mover is some kind of trauma (Emotional, physical, infectious, toxic, nutrient deprivation) --> Causing epigenetic changes --> Causing immune cells to go wonky --> Causing the production of autoantibodies --> Causing disruptions in energy metabolism and the engagement of Naviaux's Cell Danger Response --> Causing all the other observed downstream issues in ME including gut dysfunction, ANS dysfunction, Endocrine dysfunction, etc

Thoughts?

I would suggest to move the epigenetics some steps further down in the sequence.
Maybe something like this?

1. trauma that activates an immune response
2. autoimmunity (may occur more often in some families, maybe more likely if immune system is activated concurrently with Fight-or-flight adrenergic response)
3. immune system and gut micro biota may be dependent of each other, and interdependently affecting the other
4. self-reinforcing processes aggravate the autoimmune response in a vicious circle,
5. at relapses the number of autoimmune targets maybe increases, introducing new symptoms
6. maybe the long lasting autoimmune response results also in epigenetic changes
7. internal cell responses (that in healthy individuals serve to protect against some viruses) limits many energy-critical processes in the cell and will result in seemingly unrelated symptoms
8. epigenetic changes may fit in here to
9. repeat from point 3

 

[mermaid]

Sorry @mermaid it has taken me so long to reply. I have had a few weeks where typing increased my nerve pain too much and so couldn't respond until now.

I did consult with Dr myhill many years ago but not to do with thyroid. I know some have been helped by Dr Myhill but she gave me some advice that I think plunged me into very severe M.E. I am also not someone who finds her diet advice easy so have never followed it strictly so I have not consulted with her for a very long time.

I saw the late Dr Skinner for my thyroid when I first got ill eighteen years ago and he put me on armour thyroid which I took for a few years and then I switched to T4-T3 combo. My T4 was within range when he put me on it but only just. I know most GP would not have prescribed. I still became bedridden eventually on armour thyroid. The NHS consultant at my nearest CFS clinic visited me at home once when at my worse, a one off, and as my blood cortisol was very low he put me on ten mg hydrocortisone. So I think my M.E probably affected my thyroid but it is only a small part of the picture of my illness.

Hello again @anniekim. I just looked back at your previous posts to me, and you may be interested to know that I decid@ed to ask the GP to test my antibodies while I was having some other tests done. Certainly there was sign of an excess of antibodies, so I do now know for certain that I have Hashimoto's. I think it explains a lot in my case.

Goodness me, that must have been devastating to follow Dr Myhill's advice and to get so much worse. I have read of other people who have not done well on her treatment, and for myself I don't accept all I read, but pick and choose what I feel comfortable with. I feel that I know my body best. I also don't follow the diet advice she gives strictly either, as I have severe food intolerance that seems to be more histamine based than anything else (I notice that there is nothing about histamine on her site). Frankly I feel I have such a miserable time with food, I have had to work out myself what I am able to eat and not follow someone else's rigid plan.

I know that some people believe you end up with autoimmune illness via leaky gut, and having had a lifetime of gut issues, that seems likely for myself.

I see that Armour didn't help you. Many people are helped by NDT, but I have changed back onto T3 only since I last wrote. It didn't work out for me either, and I felt much worse over the nearly 3 months I tried it. Still, I have to take something as I am diagnosed with this long term, but whether I will ultimately be pushed back to Thyroxine by the NHS I don't know yet.

 

[FieriBrandon]

I did consult with Dr myhill many years ago but not to do with thyroid. I know some have been helped by Dr Myhill but she gave me some advice that I think plunged me into very severe M.E. I am also not someone who finds her diet advice easy so have never followed it strictly so I have not consulted with her for a very long time.

Could you go into more detail regarding which of her recommendations hurt you?