What is your personal theory or understanding of ME/CFS?

[keenly]

Yah, but we're still waiting for the aliens to attack us with bioweapons that ME would protect us from.

Alternatively, it could be protecting us from a nasty microbe that attacked our distant ancestors. Maybe so distant that they only had a few dozen cells at that time. The attacker might be billions of years gone...but we're safe from it! Umm, okay, maybe everyone else is safe from it too now.

Protective mechanism or not, it's now a problem for us.

CFS is primarily an adaptation to defend against the greatest threat of all to any life form using oxygen and that is a threat to redox stability.

 

[andyguitar]

@notmyself should check out the NICE website to see the side effects of Mirtaxapine are. The listed effect of withdrawl look particularly relevant. @Hip might find the effect of DON fungi on animals interesting. Ask people who keep livestock or horses about the hazards of using 'mouldy' animal feed. The LSD angle is not what is the most interesting thing re fungi, it's the elevation of serotonin that occurs. As for there being no research to show that adverse drug reactions cause CFS. No i dont expect there is. Most the research starts with the assumption that its a virus/immune problem ect. However if you take the very simple step of looking at what regulatory authorities and even drug companies say about the products you will see symptoms that could be called 'CFS'. Shame none of the ME/CFS "experts bother to look. That ME/CFS appears in 9% of cases of glandular fever is a very good point, but not one that support the 'it's a virus theory. Simple reason for that is that the statistic quoted shows that glandular fever does not show up in a massive 91% of cases. The fungi in question does not decend on an area in a cloud. It is most likley to be present in the environment all the time but only proliferates in very specific environmental conditions. As do all fungi. Anyone who goes mushroom hunting will know that.

 

[andyguitar]

Ah one thing i forgot to mention about fungi and human health. There is one which is very well known for causing health problems. Anything from so mild you would'nt notice all the way to very rare cases of death. Everybody has heard of that fungi. It's called penicillin. Not uncommon in the wild.

 

[Gingergrrl]

https://en.wikipedia.org/wiki/Hero's_journey

Thx for the link and it explains what I was wondering (but has nothing to do with ME/CFS or illness).

 

[Hip]

@Hip might find the effect of DON fungi on animals interesting. Ask people who keep livestock or horses about the hazards of using 'mouldy' animal feed.

I think the mold and biotoxin connection to ME/CFS is very interesting: during the Lake Tahoe ME/CFS outbreak, the lake was covered in a toxic cyanobacteria called Microcystis. It was speculated that a virus plus biotoxins from Microcystis may have caused the Lake Tahoe epidemic.

This would explain why when the virus spread outside the Lake Tahoe area, it no longer triggered ME/CFS. It was posited that only when you caught the virus while being exposed to these biotoxins were you at high risk for developing ME/CFS. More info about the virus + biotoxin trigger in this post.

Dr Joseph Brewer has also found that ME/CFS patients may have a mold infection within their sinuses.

That ME/CFS appears in 9% of cases of glandular fever is a very good point, but not one that support the 'it's a virus theory. Simple reason for that is that the statistic quoted shows that glandular fever does not show up in a massive 91% of cases.

I think you meant to say that "ME/CFS does not show up in 91% of cases of glandular fever".

It is not unusual for a virus to cause severe disease in one person, whereas the next person experiences no adverse effects from the same virus.

For example, before the vaccination program, poliovirus was completely asymptomatic in around 70% of people who caught it, but in 0.5% of people this virus would cause paralysis, sometimes leading to death.

Likewise, most people who catch EBV do not get glandular fever / mononucleosis. And most people who catch coxsackievirus B do not develop for example CVB myocarditis from it.

So it is perfectly reasonable to assume that when catching ME/CFS associated viruses like EBV or coxsackievirus B, most people will have no adverse effects, but a very small percentage will develop ME/CFS.

 

[Wayne]

Trauma, or shock, eventually leading to a condition I often think of as "Post-Traumatic Stress of the Immune System. Perhaps secondarily (or not), it also almost always leads to a degree of Dysautonomia, or dysfunction of the Autonomic Nervous System, leading to many (to most) of the symptoms associated with ME/CFS. A delicate balance is upset, and the body struggles to regain its homeostasis, but is unable to for various reasons. This inability is often from ongoing stress such as nutritional deficiencies, chronic toxic exposures, genetic factors, EMFs, etc.

I've been fairly amazed over the years by the wide variety of triggers that can lead to ME/CFS. Most of us are familiar with shocks to the immune system like viruses, bacterial infections, mold exposures, parasites (protozoa), etc. But there are many other kinds of shocks that have been reported, like chemical exposures, vaccinations, emotional shocks, accidents, dental/oral infections, and other physical shocks, such as the young policeman who dove into a cold lake to save a drowning victim. Once the stress settles in, it seems to take residence in our bodies, and then settle in deeper and deeper over time. UNLESS, we're fortunate enough to recognize the stress factors that are unique to each of us, and find corrective measures--often unique to us as well

Many more paragraphs of my thoughts left unsaid!

 

[halcyon]

But there are many other kinds of shocks that have been reported, like chemical exposures, vaccinations, emotional shocks, accidents, dental/oral infections, and other physical shocks, such as the young policeman who dove into a cold lake to save a drowning victim.

Most or all of these things can cause a temporary negative impact on immune function, which then combined with a preceding subclinical or shortly following (entero)viral infection could lead to ME. I don't see any evidence for these things being a direct cause of ME, they are just host factors that make a complicated infection from a normally trivial virus more likely.

I'm not aware of any major evidence convincingly linking mold or parasite exposure with ME onset, and there is only very limited evidence linking a CFS like syndrome with bacterial infection. All of the strong evidence is of course for viruses.

 

[Hip]

Most of us are familiar with shocks to the immune system like viruses, bacterial infections, mold exposures, parasites (protozoa), etc. But there are many other kinds of shocks that have been reported, like chemical exposures, vaccinations, emotional shocks, accidents, dental/oral infections, and other physical shocks, such as the young policeman who dove into a cold lake to save a drowning victim. Once the stress settles in, it seems to take residence in our bodies, and then settle in deeper and deeper over time.

To categorize all those things as "shocks" to the body is really too vague a concept scientifically. Each one of those factors, if they can cause ME/CFS, would do so by a particular biological mechanism. To say that all these factors cause "stress to take up deep residence in our bodies and thereby lead to ME/CFS" sounds a bit like an imprecise notion that the biopsychosocial crowd might come up with, and we know just how much damage these pseudoscientific biopsychosocial ideas have done to the ME/CFS research field. With these things, you have to get down to the biomedical nuts and bolts of the causal mechanism.

I don't discount the possibility that strong emotional or psychological stress could weaken the immune response (by raising cortisol), thereby allowing a viral infection that you were unfortunate enough to catch during that time of stress to insinuate itself more deeply into the body and thus trigger ME/CFS. We have evidence from Dr John Chia that corticosteroid drugs taken during the time of an acute viral infection are almost a recipe for triggering ME/CFS, so that points to corticosteroids / cortisol playing a role in ME/CFS onset.

 

[gregh286]

Cfs is a cellular defense mechanism that is able to shut down mtorc energy pathway to preserve cell homeostatis and safety. It has ability to shut down oxygen...glycosis and krebs cycle at various times. It is diverse...mobile and able to switch to avoid detection in order to go 'around it'. A self learning beast...

You can blast it with prednisone....it finds a workaround....stimulate mtorc....it will discover a workaround....every time you trick it....it gets harder to trick again. The harder you suppress it the harder it bites back. It will do ANYTHING to maintain cellular safety.

The cell threat can have multiple pathways....biotoxin...stress.....molecular....hormonal..chemical...etc......at end of day end result same.

Organism protection at an immune level.

 

[gettinbetter]

If I was to summarize my illness I would say: I have an inability to create physical energy

Me too It's like I have a battery that drains easily and recharges very slowly
I recently found out when I use a small amount of D Ribose it helps me at night to sleep
D ribose helps with ATP which is what I don't have enough of ( I think)


I think some kind of really persistent infection is involved

 

[AdamS]

For me ME/CFS was caused by overtraining at the gym at a time when I had viral and/or bacterial infections, so to sum it up, I believe it was a case of demand (on energy) being greater than supply during a time of infection so unlike regular overtraining syndrome, there was collateral damage (probably mediated by the immune system).

For those interested this is how I progressed to full blown ME:

Stage 1 - The first insult
- Stomach flu after a business trip abroad.
- Staph infection on leg turned into cellulitis
- 1 week later, trained at the gym, bench pressing and nearly collapsed 3 sets in.
- Recovered but then declined gradually, struggled at work for 2 years, falling asleep on lunch breaks and having major blood sugar crashes while walking/exercising.

Stage 2 - relapse that made me unable to work/semi housebound:
- Came down with a cold (probably rhinovirus).
- Continued to push through at the gym and work, lifting weights excessively, 15-20 straight pull ups etc...(I used to be a County Athlete).
- Crashed at gym during chest press exercise, never recovered, now at 30%-40% ish of normal.

I would definitely describe how I feel as an issue with OXPHOS, as detailed in Tomas/Newton’s recent study. I can only function if I lay down between every activity now, my window is around 6 minutes of up time before I need to lay/sit down.

Edit: One thing I have always wondered is why all of my biggest crashes have resulted from using my arms to press weights...this continues to puzzle me!

 

[Learner1]

I lift weights, too. Muscles need a lot of oxygen. I think your OXPHOS theory makes a lot of sense.

Sometimes, it takes me 3 naps on the gum floor to get through a workout, though I've learned to stop and rest in the nick of time to prevent PEM.

 

[Wayne]

I can only function if I lay down between every activity now, my window is around 6 minutes of up time before I need to lay/sit down. ... Edit: One thing I have always wondered is why all of my biggest crashes have resulted from using my arms to press weights...this continues to puzzle me!

Hi @AdamS,

Raising my arms to do anything has always created some difficult crashes--even when I raised my arms for only relatively short periods of time. I wondered for a long time if it was a heart thing, but I've now come to believe it's mostly a result of Dysautonomia.

Specific for me, is that I have all the symptoms of Neurally Mediated Hypotension (NMH). I recently discovered that wearing a compression belt around my waist significantly improves my stamina, including my ability to raise my arms, stand, etc. I'm hoping that adding compression socks might improve things even further.​

 

[Rebeccaji]

Hi everyone, interesting thread, this is my first post on this site. Fascinated to find so many different approaches, to see people's experience of the same symptoms I have and the things they've tried, as well as the advice...

I think ME/CFS is a multifactorial disease. Mine - and I'm sure others have different paths to it - started with a vaccination that gave me light sensitivity and nausea/dizziness, acute dehydration (Sjogrens?) and other neurological symptoms, progressed through traumatic grief, and entered a catastrophic phase when I contracted a virus (pneumonia? Swine flu?) after which I was bedbound for over a year and 7 years later remain 80% housebound. I think there are precursor factors/problems, one of which is thyroid disease, which I also have. All in all, I think around 5 different things coincided, or built up over a period, to result in my ME. Others I know had reactions to hair dye, or had other kinds of viral infections, along with other forms of traumatic events. I'm interested to hear whether anyone else connects their ME to a combination of trauma/grief/stress and other trigger factors. Hope this post is of interest.

 

[Rebeccaji]

Hi @AdamS,

Raising my arms to do anything has always created some difficult crashes--even when I raised my arms for only relatively short periods of time. I wondered for a long time if it was a heart thing, but I've now come to believe it's mostly a result of Dysautonomia.

Specific for me, is that I have all the symptoms of Neurally Mediated Hypotension (NMH). I recently discovered that wearing a compression belt around my waist significantly improves my stamina, including my ability to raise my arms, stand, etc. I'm hoping that adding compression socks might improve things even further.​

Do you have a very tight upper spine/neck? ME sufferers commonly have a shared symptom of extreme tightness of the upper spine, and this is why lifting arms is so difficult. I can't tell you the exact origin of this, but in chiropractic approaches and yoga approaches to working with ME, and Perrin technique etc, this upper spine problem has been widely noted. It seems to constrict the nervous system of the upper body. My worst crashes have all been cervical spine/mid spine overload ones. Look after your neck and upper back! Treat them gently if you can.

 

[Rebeccaji]

When someone here recently posted that consumption of alcohol gave them energy, I knew that I have really nothing disease-wise in common with that person. Alcohol kills me. It's bottled poison for me, exacerbating all my ailments. Drinking wine, after a few hours time, makes me nearly comatose. Not something I aspire to.
Alcohol does that to me, too. I never touch it. I can cook with a tiny amount, so long as the alcohol burns off. Not had a drink for about 10 years.

 

[Runner5]

Do you have a very tight upper spine/neck? ME sufferers commonly have a shared symptom of extreme tightness of the upper spine, and this is why lifting arms is so difficult. I can't tell you the exact origin of this, but in chiropractic approaches and yoga approaches to working with ME, and Perrin technique etc, this upper spine problem has been widely noted. It seems to constrict the nervous system of the upper body. My worst crashes have all been cervical spine/mid spine overload ones. Look after your neck and upper back! Treat them gently if you can.

Wow, I didn't know about the upper back connection with ME. My neck and upper back are incredibly bad. I have had a CAT scan done, X-Rays, the works. I do a neck / upper back gentle yoga workout and it seems to loosen it up a bit. I had a bad fall as a kid onto my head / neck, always figured it was residual arthritis setting in from that. I've also been in to the doc about the glands swelling up like goose eggs at the back of my head, currently they're swelled up again. She told me it was from stress.

 

[Runner5]

Organism protection at an immune level.

Holy cow, what in the world is to be done then?

I developed my full blown CFS symptoms after years of ill health bouts when I hurt my foot. I was running and was about at mile five going up hill and badly hurt / tore a tendon in my left foot. It healed up just fine, I had to be on crutches for a bit but nothing severe. I thought the timing of the foot injury to the CFS start was probably coincidence. Hmm.

 

[andyguitar]

Yes the problems with upper spine/neck are common, but it's difficult to say if they are a result of the illness OR contribute to it. Being in bed a lot will cause back/neck probs. Sufferers i have known seemed to get the most benefit from Perrin technique.

 

[sorin]

I think a virus is responsible for this, and most probably a retrovirus (one related with HIV). It produces an immune dysfunction and a kind of mild HIV symptoms.