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Why Can't Medical Science Figure Out ME/CFS?

  [ 73 votes ]   [ 27 Comments ]
By Toni Bernhard, JD • www.ProHealth.com • August 29, 2012


This article was first published May 10, 2012 by Toni Bernhard, J.D.* in her Psychology Today blog – “Turning Straw Into Gold (Illness through a Buddhist lens)”. As Toni explains, she’s been thinking for a long time about why doctors tune out when the ‘chronic fatigue syndrome’ diagnosis is mentioned.

________________________________

Why Can’t Medical Science Figure Out Chronic Fatigue Syndrome?

Toni Bernhard, J.D.

Toni Bernhard on ME-CFSIt’s been a little over a year since I wrote a piece that garnered a lot of attention: “The Stigma of Chronic Fatigue Syndrome.” Since that time, little has changed for me regarding my own illness. I’ve had two more encounters with doctors like the one I shared in the earlier piece. In both instances, upon seeing the diagnosis “Chronic Fatigue Syndrome” on my chart, they changed their attitude toward me - and not in a good way.

One of the doctors suddenly began to speak to me in an overly slow and childlike voice, as if I were incapable of understanding what she was saying. This behavior is called infantilizing - defined in the dictionary as “treating someone as a child or in a way that denies their maturity.”

All I was doing was sitting upright on the exam table - like the adult I am - while she looked at my outer ear which had become infected from getting water in it. And so it goes.

Why has there been so little progress in treating CFS?

I’m a layperson, but this is the problem as I see it.

People who suffer from different illnesses that medical science has yet to isolate are lumped into the one designation: Chronic Fatigue Syndrome. As a result, when a study is conducted on CFS-diagnosed people, researchers aren’t looking at people who have one discrete illness.

No wonder studies tend to yield little valuable information. And, no wonder when a study does appear to show something significant, it can’t be duplicated in other CFS “subjects.”

If Chronic Fatigue Syndrome is, indeed, several discrete illnesses, until they are isolated from each other and studied individually, little progress will be made in finding effective treatments or cures.

To complicate matters, not only is there a lack of agreement on the need to isolate these illnesses, but the ability to do so is impeded by another phenomenon: people with illnesses that have been isolated and named, often have the diagnosis “Chronic Fatigue Syndrome” added on by their doctors.

This happens because doctors don’t understand that “chronic fatigue” is a symptom of many debilitating illnesses. But “chronic fatigue” is not “Chronic Fatigue Syndrome.”

This mislabeling has several adverse consequences.

First, it makes it all the more difficult to separate out the discrete illnesses that are suffered by people with “real” CFS.

Second, once this group of people who have a non-CFS illness are labeled as also having CFS, they are added to the pool of those who might become subjects in CFS studies, and this can seriously muddy a study’s findings.

One of the consequences of failing to isolate discrete illnesses  

Because those of us with a CFS diagnosis are lumped into one group, when we read about CFS-diagnosed person being cured by a treatment, we rush out and spend hundreds, sometimes thousands of dollars on it, only to be terribly let down and possibly further harmed.

Toni Bernhard - How To Be SickSince writing How to Be Sick, I’ve lost count of the number of cures that well-intentioned people have suggested to me. But there’s no reason to believe that these cures would be effective for my particular constellation of symptoms.

If Chronic Fatigue Syndrome is several discrete illnesses, it makes sense that some people will be helped by a particular treatment, while others will not. It’s finally dawned on me that it doesn’t make sense to spend money on a treatment just because it helped or cured another person, when the two of us are unlikely to even have the same illness.

I have yet to find anyone who is sick in the same way I am sick

I was diagnosed with Chronic Fatigue Syndrome in January of 2002, six months after contracting a serious viral infection. In the 10+ years since I’ve had this diagnosis, I have yet to find a single CFS-diagnosed person who shares the same constellation of symptoms that I have.

(I should add that other conditions and illnesses have repeatedly been ruled out by my diligent Primary Care Physician, such as Lyme disease, autoimmune disease, heart disease.)

I know that people can have the same illness without all of their symptoms overlapping. But, if Chronic Fatigue Syndrome were one illness, I’m positive I’d have found at least one person by now whose symptoms are almost identical to mine.

But I haven’t. And it’s not just my particular case. When I read a description of a CFS-diagnosed person, his or her symptoms never even approach a 100% overlap with any other CFS-diagnosed person I know or have read about.

The only symptom everyone appears to have in common is “post-exertional malaise” (PEM) which refers to a bad flare-up of symptoms after a period of physical or mental exertion.

Which activities trigger PEM and how long it takes to trigger it varies from person to person.

I know from personal experience how horribly debilitating PEM is. But I also know people with non-CFS illnesses who suffer from PEM - a friend with Multiple Sclerosis is one example.

Aside from PEM, the variation in the constellation of symptoms among CFS-diagnosed people is staggering and supports the view that CFS is not one discrete illness:

• Some people suffer from terrible muscle and joint pain; others are relatively pain-free.

• Some people suffer from a debilitating fatigue, but not a sickly one; others suffer from a sickly fatigue, as if they have a permanent flu.

• Some people’s fatigue is similar to that in narcolepsy - they’re sleepy all the time and have trouble keeping their eyes open; other people’s fatigue is similar to what typically accompanies other illnesses - they feel a deep heaviness and lack of energy, but they’re not sleepy.

• Some people have tender lymph nodes and chronic sore throats; others do not.

• Some people pick up any virus or bacteria they’re exposed to; others appear to be immune from these acute illnesses, as if their immune system is on high-alert all the time.

• Some people suffer from dizziness or serious vertigo; others do not.

• Some people suffer so badly from Orthostatic Intolerance that they can’t stand up for more than a few minutes at a time; others don’t have this problem.

• Some people wake up in morning as unrefreshed as when they went to bed; others find sleep to be restorative or partially restorative, even if only temporarily.

• Some people have blinding headaches; others do not.

• Some people have terrible night sweats; others do not.

• Some people have chronic digestive problems, including nausea, bloating, diarrhea; others do not.

• Some people suffer from debilitating heart palpitations; others do not.

• Some people have an extreme sensitivity to light, sound, and/or physical sensations on the skin; others do not.

• Some people suffer from cognitive difficulties that seriously impair their memory and/or their ability to concentrate; others do not.

• Some people’s symptoms appeared and worsened gradually over a period of months or even years; other people’s symptoms appeared immediately on the heels of an acute illness, such as the flu or another infection.

Does this parade of “symptom variation” and the notable lack of overlap in the constellation of symptoms from one CFS-diagnosed person to another sound like we could possibly be talking about one discrete illness?

It’s time for the medical community to acknowledge that Chronic Fatigue Syndrome is not one illness and to begin the difficult task of separating them out.

No one should use my analysis as an excuse to claim that CFS doesn’t exist (as many of us have cruelly been told). We are sick. We are just not all sick with the same discrete illness. I’m weary of reading about a CFS-diagnosed person’s symptoms and saying to my family: “I don’t know what she has, but it’s not what I have.” Every time I say this, I feel both frustrated and deeply sad for both of us.

And, it drives home just how far we are from finding out why we’re sick and how we might get better.

___

* This opinion piece is reproduced here with Toni Bernhard's kind permission. ©2012 Toni Bernhard. All rights reserved. Toni is the author of the very popular Nautilus Gold Medal winning book, How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. Until she had to retire due to ME/CFS, she was a law professor at the University of California-Davis, serving six years as the dean of students. She can be found online at www.HowToBeSick.com. She also writes regularly for Psychology Today at www.PsychologyToday.com/blog/turning-straw-gold.
 



Please Discuss This Article:   Post a Comment 

There is an answer to all these questions, alas it is being largely ignored by medical science
Posted by: island-grace
Aug 29, 2012
There is a medical hypothesis about the background and mechanism behind this phenomenon of CFS/ME. It is called the Amygdala Hypothesis and was set up by a young man called Ashok Gupta. From this hypothesis, convincing explanations can be derived giving answers to all the puzzling issues raised in this article. Moreover, tools and techniques are being provided to overcome the condition. And they work!

Who is writing suffered herself from CFS for four years and then recovered with the help of this programme. She is now a coach helping others in their recoveries.

If you want to know more about it, just go to www.guptaprogramme.com and look for "Medical Hypothesis"
Reply Reply

 
From the author of the piece
Posted by: 013101
Aug 29, 2012
The Gupta Programme helps some and not others. That's the point of my piece - that CFS isn't one illness. Whether Ashtok's techniques help depend on what is wrong with the person trying them. Amygdala Retraining is not a cure all for CFS. I think that Ashtok is a sincere person and has the best of intentions, but, as I said in the piece, there are many causes for CFS. Not all of them are due to an overactive amygdala.

 

 
Not one disease therefore no one solution
Posted by: andrewclark55
Aug 29, 2012
You seem to have made exactly the mistake mentioned by the writer of the article, assuming that one treatment - in this case Amygdala Retraining - applies to all cases of ME/CFS.

I have tried Dr Gupta's programme (for Fibromyalgia), to no effect whatsoever. It may work for some, but not for me.

Likewise I have recently discovered a treatment that does work for me - a low-oxalate diet (Google it), but I would not suggest that it will work for everyone, since we are all individuals and need to have our illnesses regarded likewise until more is known.

In my case I have been able to come off medication completely within a few days of changing diet and have lost almost all my pain as a result of trying it. I thought I was following a good healthy diet regime, even using soya milk in place of dairy to relieve symptoms of IBS, only to find out that soya is high in oxalate and was probably the main contributor to my pain.

For those interested the original article leading to this diet is at :-

http://www.dailymail.co.uk/health/article-2187890/Ditch-healthy-berries-beat-muscle-pain-The-eating-plan-helped-cure-aches-pains.html

and unlike the Gupta program, you can try it for free!

 


Mito disease connection?
Posted by: sharilynn5
Aug 29, 2012
Personally, I believe ME/CFS are forms of mitochondrial disease. I have read something along those lines and, the symptoms of mito, are similar to ME/CFS. They may be milder forms of the more severe forms of mito, but I still think they are connected.

I think if this connection could be made then those with these diseases would be taken more seriously, and perhaps get a diagnosis in a more timely matter, which would lead to treatment of the disease.

Reply Reply

 
Why Can't Medical Science Figure Out ME/CFS?
Posted by: Susanna1
Sep 5, 2012
I agree, Sharilyn5, that ME/CFS is probably a mitochondrial disease. There is evidence for such abnormalities. There are, of course a number of diseases in which the mitochondria are involved, eg diabetes, Alzheimer's, etc. It seems that a condition with similar underlying causes can be expressed in different symptoms. Prof Martin Pall states this also in his book "'Unexplained' Illnesses..."

That recent London conference of Invest in ME has some fantastic presentations indicating common underlying features such as inflammation. These things can also take different paths in different people. There are vey interesting findings here, in the search for a diagnostic test. The DVDs, though technical are well worth a look.
http://www.investinme.org/IiME%20Conference%202012/IiME%20International%20ME%20Conference%202012%20DVD%20Orders.htm

 


Minding Your Mitochondria TEDx Talk
Posted by: SuellaP
Aug 29, 2012
No doubt you have seen and considered this talk on her personal cure for MS (not ME/CFS)by Dr. Terry Wahls. Her dietary protocol was very similar if not identical to that of Dr. Sarah Myhill who feels that nutritional changes are vital to deal with those pole with CFS/ME who have PEM.

It certainly makes sense to me to give myself the best nutrition possible. I'm not sure if or how the other supplements and additives that Dr. Myhill recommends are important, but they seem to work for some.

If it is important to support the mitochondria in this way, I'm hoping that this may increase the energy and efficiency of my personal energy providing segments of my body.

http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Min

Toni,
Do you have an opinion on this? No doubt you will have tried this as well as many many other protocols.

Thank you for considering this request.
Reply Reply

From the author of the piece
Posted by: 013101
Aug 29, 2012
The Gupta Programme helps some and not others. That's the point of my piece - that CFS isn't one illness. Whether Ashtok's techniques help depend on what is wrong with the person trying them. Amygdala Retraining is not a cure all for CFS. I think that Ashtok is a sincere person and has the best of intentions, but, as I said in the piece, there are many causes for CFS. Not all of them are due to an overactive amygdala. Warmest wishes, Toni Bernhard
Reply Reply

To Suella
Posted by: 013101
Aug 29, 2012
I would say the same thing about this protocol as I said about the Gupta Programme. It depends on what subtype of ME/CFS you have. With both protocols/programmes, I know some people who were helped, some who were made worse, and some for whom it made no difference. We have to be very careful though not to fall into a "blame the patient" mentality if a protocol that works for one person doesn't work for another. Warmly, Toni
Reply Reply

Different root causes, same core pathophysiology
Posted by: richvank
Aug 29, 2012
In my view, Toni is certainly correct that there are many causes of ME/CFS. However, I also believe, based on considerable evidence from testing many people who have ME/CFS over the past 5 years that there is a common core to the pathophysiology of this disorder, and it is a vicious circle mechanism that involves glutathione depletion, a functional B12 deficiency, a partial block in the methylation cycle, and loss of folates from the cells. This vicious circle is described by the Glutathione Depletion--Methylation Cycle Block model.

The differences in symptomatology among people with ME/CFS can be accounted for mainly by differences in the various infections and toxins that either contributed to causing their illness, or that accumulated after they became ill, because of the dysfunction in the immune system and the detoxication system that results from this vicious circle mechanism. Other contributors to these differences are differing genetic makeup, nutritional status, and health history.

But the reason this disorder has a unique identity is that there is a common core to the pathophysiology, which is treatable, and this treatment brings improvement to most who follow it.
Reply Reply

 
Post Exertional Fatigue - The Common Denominator
Posted by: lacste
Sep 1, 2012
It seems like we should not get away from the point that post exertional fatigue appears to be a common denominator among all persons with CFS/ME even though they exhibit other varying symptoms. All persons with CFS are in a state of accelerated oxidative stress and have dysfunctional energy metabolism.

I'm pleased that Dr. van Konynenburg and others are highlighting this point and looking at a very fundamental biochemical process as the potential source problem. I hope more attention can be focused in the research community on the numerous health consequences that partial blocks in the methylation cycle and the resulting glutathione depletion might have.

I think the research community needs to continue to focus more on the similarities rather than the differences of the condition in order to best understand it. At that time the medical community will be in the best position to begin tailoring treatments to individuals.

 


continued
Posted by: richvank
Aug 29, 2012
Sorry, my comment was posted before I was finished.

The test for this vicious circle is the Methylation Pathways Panel, offered by the Health Diagnostics and Research Institute in New Jersey, USA, and the European Laboratory of Nutrients in the Netherlands. I think I have yet to find a person who has ME/CFS for whom this panel does not indicate the presence of the vicious circle described earlier.

The essence of the treatment consists of a relatively high dosage of hydroxoB12, taken sublingually or by injection, together with an RDA-level dosage of oral methylfolate and supporting nutrients to deal with deficiencies in vitamins, minerals, amino acids and essential fatty acids. Details have been posted on the ProHealth FM/CFS board in the past, as well as the Phoenix Rising forums, Co-Cure and the cfs_yasko group. This combination usually overcomes the vicious circle over a period of a few months and brings considerable improvement.
I recommend that anyone on this treatment be monitored by a licensed physician. Even though the treatment consists only of nutritional supplements, a small number of people have reported experiencing serious adverse effects while on this treatment.

Best regards,

Rich Van Konynenburg, Ph.D.
Reply Reply

Video about GD-MCB hypothesis, testing, treatment and results
Posted by: richvank
Aug 29, 2012
For detailed information about the Glutathione Depletion--Methylation Cycle Block hypothesis and how it explains the variety of symptoms and lab test abnormalities of ME/CFS, as well as how to test and treat based on this model, I recommend viewing the video at this site:

http://iaomt.media.fnf.nu/2/skovde_2011_me_kroniskt_trotthetssyndrom/$%7Bweburl%7D

The slides can be obtained by clicking on the blue print below the video.

Best regards,

Rich Van Konynenburg, Ph.D.
Reply Reply

ME/CFS
Posted by: NikkiAnne
Aug 29, 2012
Thank you for the wonderful article. I have had this for 30 yrs. and have experienced all the symptoms you've listed at one time or another. I am now 81 yrs. old and still trying to feel better. I started taking Olive Leaf Extract this week hoping it may help even a little. I suppose there's always hope. I have become almost completely isolated from everyone and everything. I am so thankful for this website because I know I'm not alone.

My very best to you.

Reply Reply

 
You're so welcome
Posted by: 013101
Aug 30, 2012
I'm just so glad to read that my article helped you feel less isolated and less alone. It's so tough to be sick and not have the answers. Treatments that work for some people don't work for others or can even make them worse. That just adds to the stress of the illness. Take good care. Toni

 


YOU ARE SO RIGHT
Posted by: spiketheartist
Aug 29, 2012
I just wanted to say I agree with you completely and have thought the same way for years. That's the only reasonable explanation I've seen for the widely-varying test results and the effectiveness of some remedies on some people but not on others. There is no ONE right answer. In fact, some remedies that cure some people may actually be harmful to others. That's what happened to me when I tried one of those anti-virals that were so highly touted 6 or 7 years ago: I immediately got sicker and stayed sicker for months, and it wasn't just "herxing" since the levels of other virus antibodies in my blood went up. After about six months, I quit, and I have never returned to my previous condition which, as lousy as it was, now looks golden to me.
Reply Reply

 
worse, not better
Posted by: friend_of_cfs
Aug 29, 2012
Of course, I want to be clear, that's just what worked for me.

It's SO disappointing when what we do to get better backfires on us! I still get backfires all the time, but I'm not giving up until I get completely well. Good luck to you, and to us all!

 

 
Hello Spikeheartist
Posted by: 013101
Aug 30, 2012
I had the same experience with anti-virals. They made me worse while, at the same time, my titers spiked. It's another reason I don't think we're talking about one illness -- the fact that the same treatment can help some and make others so much worse. Take good care. Toni

 

 
worse, not better
Posted by: friend_of_cfs
Aug 29, 2012
I also got worse after doing protocols for viruses, bacteria and parasites. What I'm starting to see now is that all of these can harbor heavy metals and other toxins, including biotoxins. So now when I do a protocol I make sure I do a detox protocol afterwards.

 


methylation
Posted by: friend_of_cfs
Aug 29, 2012
Hi Toni,

I'm finding your postings extremely helpful as are many of my friends. We are fortunate to have forums like this to learn from each other, obtain support, and share our experiences.

After nearly 2 decades of illness, I am grateful that so many new protocols exist. I find I benefit somewhat from all of them. It's like there are many facets to this illness, and anyone of them can be a door. Viral, bacterial, parasitic, mold and fungal, toxicologic, mitochondrial, gut-brain, neuroimmune, and so forth. So many people, so many stories, and so many profiles of illness.

I have personally found Rich Van K's simplified methylation protocol to be helpful combined with a self-customized version of the Cutler protocol. As I learned from Rich Van K, kickstarting methylation increases detoxification rates which can lead to increased symptoms for a period of time. That's where the Cutler protocol comes in for me - to bind heavy metals and other toxins. This helps to alleviate my symptoms on the alternating days that I do the methylation protocol. The other days = my "methylation vacation" days - I seem to be getting progressively better. Other people I know are finding anti-viral and anti-bacterial drugs to be extremely helpful. I don't have health insurance, but I find I can accomplish a lot with herbs and other supplements.

If, as Dr. Kogelnik says, CFS is like getting a lot of "dents" in your immune system, then my thought would be that removing enough of these dents will allow your immune system to re-balance itself. Ditto for other facets of illness - if we address what we know, we find out what else our bodies can heal on their own. As you so wisely pointed out, every one of us is different, so what works for one person may not work for another. But it's good to try different approaches to see which combinations work for you.

Mimi


Reply Reply

 
Thanks for your thoughtful feedback Mimi
Posted by: 013101
Aug 30, 2012
Yes, it's good to try different things and see what works. I've done that but, so far, nothing has helped and many of the treatments have made me worse. My current approach is to just try to get as healthy as I can aside from the CFS in the hopes that those "dents" in my immune system will right themselves. Warmest wishes, Toni

 


Why CFS/ME symptoms are so varied
Posted by: wlozinska
Aug 29, 2012
Having read lots of information on CFS/ME I have come to the conclusion that it starts off with a virus attack. Some of these viruses eg HHV-6 can penetrate the protective brain barrier. Then, it depends on where it goes and how much damage it does as to what the victim's symptoms are. It can attack the hypothalamus and/or hippocampus, which control many of the body's functions, such as temperature control, creating all sorts of weird symptoms.

Another thing that seems to happen, is that the balance of good and bad bacteria in the gut gets disrupted, leading to IBS and another set of symptoms.

Of course, as the article says, the real problem is that doctor's don't really know which of their patients actually have CFS/ME, as so many actually have other things wrong with them, which perhaps also aren't all that easy to diagnose.
Reply Reply

Symptom checklist?
Posted by: hawkspirit
Aug 29, 2012
Toni, usually I agree with what you say about CFS and I find a lot of value reading about your own personal illness experience, but I found I had some problems with this article.

You said you have yet to find anyone who is sick in the same way you are sick. IMO, if you are looking for an exact symptom-to-symptom match-up, running down a specific list, you will find that probably *no* illness is going to be able to produce that kind of uniform response in all its sufferers. And in that way, CFS is no different.

And about that big list of symptoms that some people have had and others haven't, I've had *all* those symptoms on that list -- but not all simultaneously. If you asked me ten years ago, I'd be able to check off a great number of symptoms on the list. If you asked me at my onset 35 years ago, I'd have a different set of symptoms to list. And at my point today with this illness, I have yet a different selection of symptoms to check off that very same list list. How can this be explained in the context of this article? Am I to think I've had several different illnesses all these years? I do meet the Canadian Consensus Criteria for CFS, by the way.
Reply Reply

 
Doctors tune out
Posted by: Karob
Sep 2, 2012
I think doctors tune out-because they are just as frustrated as we are with CFS. I think it has been understood for quite some time that it is not an illness with a cure. It is a syndrome, with multiple causes and symptoms. In my case, immune, DNA issues, mitochondria, virus, etc. You have to ask why the immune system was not able to fight off the virus that other people recover from.

We have to take charge of our health and our lives and be willing to try many different things to get our bodies do the best that it can with what we have been dealt with.

I have come a long way in my recovery, and I have accepted that I will always have to take extreme care with my diet and lifestyle to maintain this level of health.

 

 
You make some excellent points
Posted by: 013101
Aug 30, 2012
You make some excellent points and, of course, my analysis could be wrong. But in my experience of being in contact with dozens and dozens of people on the web with CFS, I just find it hard to believe we have the same illness, given the symptom variation. It's a much wider variation than I've seen with any other illness. And another reason I find it hard to believe it's one illness is that people respond so differently to treatments. The same treatment can make one person worse but help another. The same treatment can cure someone and have no effect on someone else. I wish we had some answers! Warmest wishes, Toni

 

 
CFS/ME
Posted by: gb66
Aug 29, 2012
I agree with everything that Hawkspirit said. I think it's one illness with different symptoms over the course of the illness. I also believe that some have FM in addition to ME/CFS and that accounts for some of the differences. I've had both for over 30 years with a viral-like onset.

 


Why do people with ME/CFS have such different symptoms?
Posted by: Forebearance
Sep 3, 2012
Hi everybody,

I think there are two reasons why we are such a varied population, besides the possibility that we have different illnesses.

One is that ME/CFS changes over time. As Dr. Cheney noted, it has stages. Like the previous commenter, I have had all the symptoms on your list at one time or another over the past 22 years.

The other is that whatever causes ME/CFS seems to pick on whatever weaknesses the body has. If your digestive system is a weak point, then it will be affected a lot. If your endocrine system is a weak point, then your hormones will get messed up.

I have found lots of ME/CFS patients who seem to have trouble with getting rid of poisons as the root of their symptoms (although I don't think we understand well enough yet why we get into this situation). The neurotoxins they and I are battling are known to attack a person's inherent vulnerabilities.

Forebearance
Reply Reply

 
addition
Posted by: Forebearance
Sep 3, 2012
Or, to be more accurate, I should have said I've had most of the symptoms on your list.

 



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