Chronic Fatigue Syndrome and the Scandal of Medical Ignorance

originally posted by: Stormdancer777
a reply to: undo

I really don't know, but the last few years have been bad.

i had a few after my first baby. i found out if i went outside and focused on deep breathing and calming myself, it went away, but it wasn't easy and took at least an hour at first. but the more i practiced that, the easier it got. does yoga include deep breathing or breaths for calming the body? i love watching tai chi. just watching it is relaxing lol

a reply to: undo

Thanks for the info. The mycoplasma theory is interesting but does not seem to be supported by research.

Investigations have focused on a possible link to it being a cofactor in HIV infection as well as fibromyalgia, gulf war syndrome and chronic fatigue syndrome, however the belief that M. fermentans is pathogenic in such conditions has largely been disregarded after the failure of several large scale studies to find a link. Due to its incredibly small size it is difficult to determine the full extent of its role in human diseases, while M. fermentans has been implicated in a myriad of diseases, research at the current point has not conclusively proven its pathogenicity in humans outside of opportunistic infections
Source

I do agree that immune, endocrine and neurological dysfunction play a role (not forgetting nutrition and metabolic issues). Your description fits more with ME (myalgic encephalomyelitis) in my opinion. From extensive reading I have learned that there is a school of thought that believes ME and CFS are two completely different conditions.

Despite all my research I am still uncertain whether interventions/treatments only optimize health in the face of an unpredictable illness or if those treatments/interventions have a direct impact on the course and progression of CFS.

originally posted by: undo
for the nerve damage, i take methyl B-12 and alpha lipoic acid. note that it has to be METHYL B-12. not normal B-12.

Another member who seems to be an expert on nutrition recommended Sublingual methycobalamin. I have ordered some to try.

a reply to: Stormdancer777

Anxiety states and panic disorder have been linked to CFS especially due to sensory overload when fatigued. Never let anyone belittle you or undermine what you go through with panic disorder. I have suffered with reactive depression all my life (6 episodes so far after big life events). My depression manifests as panic disorder which I would say is the most frightening and distressing thing I have ever encountered in my life.

Sublingual methycobalamin is methyl b-12

Look up Wheatbelly blog.

a reply to: earthblaze

interesting. well you know, it fits gulf war syndrome to a T. it presents itself like several different maladies because it doesn't always attack the same nerve sets. but imagine, your nervous system is your electrical circuits to your body parts. if an electric system starts to misfire, or delivers half the power, the body part will start to suffer.

it's a chameleon, i think. that's why they are having trouble with it. it invades the cell cause it doesn't have a cell wall of its own and then uses your body against itself,like an auto immune disease.

i did some early research on this, back about 14 years ago or so. during the gulf war, the troops were given an experimental vaccination for japanese tick borne encephalitis. ticks apparently carry some pretty nasty bugs of their own, as they also cause lymes disease. i think they are linked as mycoplasmic infections on top of the original infectious disease, that appear to have many of the same symptoms when active in a person's body.

on top of that, these infections were spread to their families via intimate contact, such as kissing, sharing the same drinks/food or sexual activity. many spouses of active duty members and some of their children also contracted gulf war syndrome, but since the doctors couldn't agree on what causes it, the whole thing was shuttled off for some future generation to worry about.

in some cases, the active duty member became a carrier but wasn't directly effected by it, but unwittingly passed it to family members.

here's an article
thinktwice.com...

Gulf War illness linked to physical changes in brain fibers that process pain
Date:
March 20, 2013
Source:
Georgetown University Medical Center
Summary:
Researchers have found what they say is evidence that veterans who suffer from "Gulf War Illness" have physical changes in their brains not seen in unaffected individuals. Brain scans of 31 veterans with the illness, compared to 20 control subjects, revealed anomalies in the bundles of nerve fibers that connect brain areas involved in the processing and perception of pain and fatigue.
www.sciencedaily.com... n-brain-fibers-that-process-pain
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yeah i think i'm right about this.

originally posted by: thedeadtruth
Gonna get flamed for this , but here goes.

Before I start..... I have been doing free work with people who have life threatening or severe mobility issues due to all kinds of reasons for 10 years. Completely free of charge.

No I do not want to sell you anything. I am mortician by trade. You are already a customer in waiting.


(1) I personally think both conditions are real CFS and Fibro.

I have seen people treat both and recover 100%. But there is no "cure" .


(2) CFS and Fibro support groups are the enemy of these conditions being taken seriously. 90% are just lazy and looking for a cure all pill. As long as zero real effort is involved, they will gladly try anything. They are nothing more than pity parties and a feeding ground for scam nutritionists.

I have seen people with MD, MND , Parkinson's etc... put more effort into their condition with less whinging. And these people are actually dying.

So remember that when you go to a health professional. Their negative experiences will taint how they treat you.



Those groups are full of white , 30+ females , who's sense of self entitled to great health is mind blowing. And most are alternative health nutters. And they are all suffering more than any other person has suffered before.


(3) These conditions are unknown in 3rd world countries. As in most countries. ( funny coincidence )

You'll not get an argument from me. I eshew those people, they make things worse, by dragging a persom down. The best thing to do, at least for me, is do what you can, and get back to work. I'm lucky to have a sit down job. I've actually had people ask me how I can work- I can't just sit on the couch all day, I have to do something. Besides, it comes and goes in waves (note my earlier post concerning antibiotics, kill the mycaplasmas, and you can push the syndrome away for a bit.) I can drywall my house until it comes back.

a reply to: thedeadtruth

Those groups are full of white , 30+ females

that's actually a very bad thing. one of the things i noted in my research was that of the people suffering with gulf war syndrome nearly 70% were caucasians, while 20% were black and the remaining 10% were hispanic, native american, chinese, japanese, etc. in other words, cfs, gws and similar maladies that frankly, all seem to be related to the gulf war experimental vaccine debacle, are primarily targeting the caucasian population as it is spreading to family members and into the non-military population at a fast rate.

a patient with gws who is not military, will not receive a proper diagnosis and that is bad because it's an auto immune disease that is contagious via intimate contact, like HIV.

a reply to: TheCounselor

do you think you are contagious during antibiotic therapy or only after it, when the thing comes back again? i have to wrap my head around why it's coming back again. it almost sounds like its presenting the same incubation problems that lymes disease has. how long are your antibiotic treatments?

a reply to: TheCounselor

I work, at 64 I still clean peoples houses,

Yoga for Fibromyalgia & Chronic Fatigue Syndrome
Benefits, Special Considerations & How to Get Started

chronicfatigue.about.com...

One study published in 2011 suggested that yoga increased the stress-hormone cortisol, which is often disordered in people with this condition.
Some yoga experts claim yoga gives the body more energy than it takes, thus making it ideal for fatigue-related conditions. ME/CFS, like FMS, does involve cortisol dysregulation

I did yoga stretches for my carpal tunnel and frozen shoulders, my carpal tunnel syndrome was so bad I would pace the floor at night, I am still working on my shoulders but they are better.

The carpal tunnel is gone.

Now a few weeks back there was an article in our local news paper, written by a doctor that also encouraged people to do yoga for carpal tunnel

restorative yoga for fibromyalgia

blip.tv...

haven't tried this, it just dawned on me today I should check it out.

youtu.be...



I do like her stretches because she uses support eventually one might not need the pillows,

Houston VA Attorney: Understanding Chronic Fatigue Syndrome in War Veterans

www.morganweisbrod.com...

Chronic Fatigue Syndrome - Reduce Your CFS Symptoms 2

youtu.be...




Acupressure

Science has shown tai chi is beneficial for fibromyalgia (FM) and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and it helps maintain muscle health of well-tended trigger points. Because of the focused movement, the mind focuses away from pain. Stretching tender, contracted muscles helps the FM patient maintain flexibility and minimizes any coexisting tendonitis and bursitis. Even CFS patients should be able to tolerate this low level of activity without triggering a flare. Of course, if you are in a flare, any activity should be minimized until your body has a chance to regroup.

www.sharecare.com...

We don't know exactly what causes ME/CFS, but it appears to be triggered by many different factors. Viral infections, genetic predisposition, environmental toxins, and immune reactions are all considered possible causes of the disorder. The persistent tiredness was once attributed to a virus called the Epstein-Barr virus (this virus is responsible for mononucleosis) but the link remains scientifically unproven and is no longer considered a potential cause
www.painresearchforum.org...
Recent research has focused on abnormalities in the levels of certain hormones, specifically cortisol (the stress hormone) and the female sex hormones. No one knows exactly what causes the regulation of these hormones to be affected in ME/CFS.
chealth.canoe.ca...
For some people, surgery, a head injury, or other traumas may trigger ME/CFS. Some medications including benzodiazapines, beta-blockers, sedatives, antidepressants, and excessive use of antibiotics can cause fatigue.

It's likely that not one single factor is responsible, but rather a combination of factors. Physical activity and physical or emotional stress seems to make ME/CFS worse. However, further research is needed to figure out its causes and to better understand this puzzling condition.

Fibromyalgia syndrome (FMS) ranks among the most enigmatic and prevalent chronic pain conditions. Researchers and clinicians have searched in vain for an underlying cause for the unexplained widespread muscle pain, fatigue, and tenderness. In recent years, FMS has come to be seen as a "central" pain disorder, arising from changes in pain processing in the central nervous system. Now several new reports show evidence for peripheral nerve abnormalities in FMS patients that could contribute to their chronic pain.

I wanted to share this one last thing, I found interesting, arising from changes in pain processing in the central nervous system.

Now chronic unrelenting pain drains all you energy, that's a fact,

Jordi Serra of the University of Barcelona, Spain, and University College London, UK, said that together the studies—including his own work—suggest that at least some people with FMS have peripheral neuropathy and support the idea that FMS is a neuropathic pain condition. “Even though FMS is currently not considered a neuropathic disorder, it really looks the same” in some respects, Serra said.

hyperactivity in sensory neurons from patients with painful peripheral neuropathy (Serra et al., 2011). Serra found similarly altered conduction and firing properties in FMS patients compared to controls.

The results raise the question of whether some patients diagnosed with FMS actually have SFPN.

different peripheral nerve abnormalities in the palms of FMS patients. HUH, that's weird

Despite their different interpretations of the recent findings, the researchers all agreed that changes in the central nervous system certainly contribute to FMS to some degree. “We are not saying the CNS is not important,” said Serra. “We are only saying that, because [pain] seems to be coming from the periphery, it makes sense to look there.”

a reply to: earthblaze

You should try a ketogenic diet. Being a nurse will help you manage (detect/avoid) excess acidosis that may result and possible electrolyte imbalance.

Due to your professionnal formation, you may have learnt that ketone bodies are sign of pathology, but in fact it is one of the greatest mistake of modern time...

Since we are born in a high carb. regimen, transition, especially when older & sick may be risky, but ketogenic diet is the prefered & most efficient cellular metabolic pathway. I know this is a very crazy & strict diet, but when confronted w/t such degradation of qualities of life, it is nothing compared.

And don't worry, our body is quite capable of making the glucose it require by itself, it is called Gluconeogenesis.

Try to find "Life without bread" it will change your life...


I was forgetting: Also say bye bye to urinary tract infections, struvite, pyelonephritis because ketone bodies while food for your cells, are poison for lots of bacteria.

I take prenatal chew able gummie vitamins, as well as a sub-lingual B-complex. In addition to that, I also supplement with B-1, Kudzu, Triphala, Liv-52, choline, inositiol, GABA, ZMA (zinc/magnesum) and melatonin (now and then).

I can honestly say I have more energy. I don't think its in the food or water, as I've always been a sleepy, tired person ever since I could remember. Dietary changes never seemed to do anything for me. Nootropics are an interesting area to look into, I thought more people knew about them but I guess. not.

a reply to: MystikMushroom

I know I need the Bs and Iron