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Adrienne Dellwo

Conflicting Approaches to Chronic Fatigue Syndrome: Mayo Clinic "Goes British"

By December 12, 2011

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The United State's prestigious Mayo Clinic has gone over to what some chronic fatigue syndrome (ME/CFS) patients, researchers and advocates consider the dark side when it comes to their approach to the illness.

What we have is 2 very different views of ME/CFS: the viral view and what's often called the biopsychosocial view. There's a ton of history behind both, but here's a quick over-view for those who aren't familiar with it:

Viral View

Researchers in the viral camp believe that certain viruses or a combination of infectious agents cause ME/CFS, either by creating a long-term infection that keeps the immune system activated, or by somehow changing the immune system so that it's stuck in the active mode even when there's no current infection.

A wealth of research shows immune system dysfunction in ME/CFS. This is a major check in favor of the viral view.

However, virus after virus has undergone the scrutiny of medical research, and thus far none of them has proven to be the smoking gun - at least, not in studies published by what are considered respectable journals. (Some researchers have published papers in less respected journals, but the lack of credibility has kept the data from being accepted.)

In this view, anti-virals are often the preferred treatment and physical exertion is kept to a minimum because of post-exertional malaise, a symptom that causes people with ME/CFS to get worse with even moderate exercise or activity.

Biopsychosocial View

The biopsychosocial folks believe that ME/CFS is more psychological than physiological. Most of them concede to some physiological aspect - mainly that childhood abuse or other long-term stressors caused physiological changes in the immune system - but believe that people basically get stuck in "illness behaviors."

The favored treatment protocol of biopsychosocial advocates is generally psychological counseling (especially cognitive behavioral therapy) and graded exercise therapy.

This view has long been put forth by British researchers and also has been adopted by the CDC. Now, the Mayo Clinic has gotten on board.

Some ME/CFS advocates are urging people with this condition to avoid the Mayo Clinic because they believe the treatment approach will at the very least not help and that it could actually cause harm.

According to the Mayo Clinic website, it now recommends psychological counseling and graded exercise, along with medications for sleep and depression. What I found most interesting is that when it talks about antidepressant drugs, it only talks about depression, when in fact a good deal of research shows neurotransmitter dysregulation in ME/CFS without depression. The clinic appears to be ignoring that body of research and instead is stating:

"Treating your depression can make it easier for you to cope with the problems associated with chronic fatigue syndrome." -Mayo Clinic website

The bit about sleeping pills is also concerning to me. It says:

"If home measures, such as avoiding caffeine, don't help you get better rest at night, your doctor might suggest trying prescription sleep aids." -Mayo Clinic website

This seems to disregard the fact that sleep does not alleviate the fatigue of ME/CFS and that we have good evidence of problems with sleep architecture. Yes, improving sleep is great and sleeping pills may help some people; however the suggesting that avoiding caffeine might be enough is ludicrous. Someone who is sleeping poorly because of a lifestyle issue like that shouldn't even qualify for the diagnosis.

Some research does show that talk therapy and graded exercise help a portion of people with ME/CFS, but critics have long charged that the research is of poor quality - which is pretty much what the biopsychosocial folks say about much of the viral work. Here's a detailed criticism of the approach, published recently by ProHealth: Data on harms done by CBT & GET therapies for ME/CFS.

My Personal View

So who do I think is right? If I have to choose one side, I'll go with the viral. In my opinion, the research is stronger there. I don't think this treatment approach will help everyone, though.

By the same token, I do need to acknowledge that some people are greatly helped by the biopsychosocial regimen.

Here's what I think: because we've got different definitions and different views of ME/CFS, I believe we're incorrectly labeling different conditions as the same thing.

Many of the top viral/immune ME/CFS researchers in the U.S. say several subgroups exist and that each subgroup constitutes a separate illness requiring specific treatment that won't work for the others. I definitely believe this is true.

Exacerbating that issue is that viral researchers are generally careful to exclude people with primary mental health problems from studies, while biopsychosocial researchers are not - in fact, a couple of studies (including the one mentioned in a 2009 post) have shown that CDC inclusion criteria are ineffective at separating ME/CFS from major depressive disorder. I think different groups of researchers are studying different conditions altogether.

What we need is for these guys to quit squabbling (which they've done for decades) and come together to critically examine the current body of work, do further work on subgrouping, and figure out who really belongs in what bucket.

For example, based on research I've seen, I believe there's a group of people with a chronic viral infection (such as Epstein-Barr), people with a combination of viral and/or bacterial infections (such as HHV-6 and Lyme disease), people whose immune systems are damaged by a hit-and-run infection, and people who have something possibly akin to post-traumatic stress disorder that causes immune-system dysregulation. Each one of these groups, and possibly others, would require a different treatment.

However, until we separate these people into appropriate subgroups, we'll never have strong research showing consistent dysregulation and underlying mechanisms or significantly effective treatments. How could we? It would be like lumping everyone with knee pain into one category without regard for whether the cause is arthritis, soft-tissue injury or a broken bone.

Have you had successful ME/CFS treatment? Was it from one of these camps or something else entirely? Did it just mask symptoms or get you back to being healthy? Leave your comments below!

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Comments
December 12, 2011 at 5:08 pm
(1) Rachael says:

Autoimmune Illness View: I believe that you have to have the genetics (an up-regulated immune system) and an environmental trigger to develop CFS. Women are more prone to develop autoimmune disorders and women are four times more likely than men to develop CFS.

In some susceptible people that trigger may very well may be a virus, or infection. In others, some sort of stimulation, or change in the immune system (adverse vaccination reactions, a chemical poisoning, or a trauma eg surgery, accidents), something that causes the immune system to go haywire in genetically, predisposed individuals; those who were born with more sensitive immune systems than the average person.

December 12, 2011 at 5:50 pm
(2) Brett says:

While you allow for a description at the end which is helpful (“something possibly akin to post-traumatic stress disorder that causes immune-system dysregulation”), I am concerned that offering only the two top-level categories you give is a very harmful dichotomy, given that it seems to suggest that the exclusion of a viral problem would only lead to a diagnosis of a primarily psychosocial phenomenon.

Yes, post-traumatic stress may be a psychological trigger, and yes, science already admits a biological influence and impact of stress, but the “immune-system dysregulation” which may well describe the actual condition itself (as opposed to its mere trigger), I believe well merits its own focus of study (especially in light of the recent research with Rituximab), and better protects us from harmful ideas that the unlikelihood of a virus inevitably brings us back to the depression-like category.

December 12, 2011 at 6:05 pm
(3) sp2 says:

The recent trail using rituximab perhaps points us in the directions of an auto immune disease.

It may be the case that CBT may help patients with symptoms. They have been reported to help patients cope with various cronic illnesses such as MS and cancer.

I don’t believe there are any trials that show they lead to recovery dispite the press claims. In the case of the recent PACE trial in the UK patients can be declared within a normal range of activity after treatment when they fall below the entry criteria for the trial.

It is not clear what benefits there are from GET but many patient surveys suggest that it could be harmful. This is not the case in trials but this could be an effect of bad reporting in trials or very different treatments in practise to trial protocols.

December 12, 2011 at 6:12 pm
(4) Jeannette says:

“Exacerbating that issue is that viral researchers are generally careful to exclude people with primary mental health problems from studies, while biopsychosocial researchers are not – in fact, a couple of studies (including the one mentioned in a 2009 post) have shown that CDC inclusion criteria are ineffective at separating ME/CFS from major depressive disorder. I think different groups of researchers are studying different conditions altogether.”

You hit the nail on the head. One side is taking a scientific approach by making sure they are studying the right cohort (i.e., excluding patients with major depressive disorder) while the other side seems to find nothing wrong with including patients with major depressive disorder or other conditions in their ME studies knowing full well that this will produce distorted results. I wonder if this is actually a first in science: To be openly (and maybe even purposefully) studying the wrong cohort and then to claim that the “findings” apply to the patients that weren’t studied and to be taken seriously by some despite these major issues. Given these facts, laying out the arguments of the different views side by side and, by doing so, suggesting that their are equally valid is misleading and it serves to down-play the danger that comes from the “biopsychosocial” side and to enable them to continue their abusive behavior. (continued below)

December 12, 2011 at 6:13 pm
(5) Jeannette says:

(continued from above) I could go on and talk about how cognitive-behavioral therapy can be beneficial for patients with any major and/or chronic illness (because it can help cope with the symptoms and the loss brought on by the illness), but how nobody would seriously suggest that cognitive-behavioral therapy be used as a treatment in lieu of the real treatments for cancer or AIDS or MS, etc. Or I could talk about how many ME patients have been hurt, some killed, by graded-exercise therapy. Those things are not disputed by any credible clinician or researcher in the field. “Credible,” as in not beholden to the insurance industry and not motivated by their desire to maintain their influence over a patient group that they should have never been involved with in the first place. But the point is that I don’t even need to go there. The folks in the “biopsychosocial” camp are not using the scientific method because they are very obviously selecting a mixed cohort (at best) and because they are changing their study criteria after the fact to make them fit their “findings.” This should be the end of the discussion right there. It is quite obvious that the “biopsychosocial” guys have absolutely no interest in “critically examin[ing] the current body of work.” Trying to engage them is futile and gives them a platform that allows them to continue their dangerous work.

December 12, 2011 at 6:25 pm
(6) phoebe says:

I didn’t have CFS until I contracted a devastating flu-like illness in the 80s, and have had chronic EBV & HHV-6 infections since then. Many many people can tell the same story. To suggest that CBT and GET are appropriate treatments for what is clearly an infectious disease is ludicrous.

December 12, 2011 at 8:28 pm
(7) Heike says:

Being ill for nearly 20 years and looking for answers in the internet I always think when it comes to this point: why haven`t I ever heard about just one (!) experience report from just one person being healed by CBT and/or GET in all these long years? Doesn`t say that all? It is obviously to me that the biopsychosocial view on ME/CFS only “works” on the paper and is leaving patients alone.

December 12, 2011 at 8:52 pm
(8) Carri says:

There is NO amount of this fake therapy that is going cure or help POTS, IBS, Hashimotos, high white cell count, high vital titers, frequent yeast infections, enlarged spleen, enlarged liver, swollen glands, the list goes on and on. These are not fake symptoms. These are measurable physical symptoms that do not come from a mental illness. Most of us who have CFIDS/ME got it after contracting some kind of infectious agent. I caught this from someone I was dating in 91. It was casually transmitted just like the strain that is epidemic in China right now. And their government has been trying to hide it, too. When is this witch hunting going to end? We are sick with a very real physical disease that has nothing to do with depression or stress. We are sick.

December 12, 2011 at 10:43 pm
(9) Rachael says:

In the 1930′s – 1950′s, there were seven medical conditions known as the ‘holy seven’ psychosomatic illnesses. In other words, the medical establishment thought they were all in the mind of the person who claimed to be sufferring from them. The holy seven are: asthma, rheumatoid arthritis, ulcerative colitis, essential hypertension, neurodermatitis, thyrotoxicosis and peptic ulcer.

It’s hard to believe that the medical profession once believed that asthma was a mental condition, not physical. People can die of asthmatic attacks, if it’s all in their mind that shows one heck of an imagination! Same goes for rheumatoid arthritis; all in the mind. Yeah right!

So, on the one hand we have a history of medical conditions that were thought to be all in the mind of the patient, which the medical establishment finally finds a real physical basis for, sometimes taking decades. Blaming someone else’s imagination for your own lack of understanding seems to be normal.

Source: http://www.wildish.eu/tag/holy-seven/

One day there will be a medical test that proves CFS is a physical illness, just like so many of us have known for a very long time.

December 13, 2011 at 1:29 am
(10) Michael Smith says:

Good article, but why consider that either a) it has to be a virus or b) if not it must be (bio)psychosocial (i.e. in the mind or behavioural)? There are, in fact, other factors that bear down on immune system and stress system performance – and one important one from the perspective of us osteopaths is a certain type of dysfunction in the spine. We don’t argue that a complex ‘shutdown’ of the person’s system like CFS is just down to spinal dysfunction, but that a broad, rational approach to treating ALL the factors that can perturb the system must be the best way, ideally at an early stage in the process.

December 13, 2011 at 2:17 am
(11) Julie says:

“However, virus after virus has undergone the scrutiny of medical research, and thus far none of them has proven to be the smoking gun – at least, not in studies published by what are considered respectable journals. (Some researchers have published papers in less respected journals, but the lack of credibility has kept the data from being accepted.)”

I don’t understand why more attention hasn’t been paid to the work of Dr. John Chia, who has published in journals including but not limited to the Journal of Clinical Pathology (2005, 2008, 2009). Does that journal lack credibility? I doubt it. Is it because he is a clinician who is also a researcher? Possibly. Dr. Chia spends his days treating hundreds of ME/CFS patients and nights working in his lab to understand this disease and to test his view that an enterovirus is the culprit – with the ultimate goal of finding an effective treatment. In a study published in 2008 he showed that 82% of ME/CFS patients vs 20% of controls were positive for enterovirus in the stomach (oversimplified description). An inadequate attempt at replication, where researchers did not follow Dr. Chia’s protocol for finding this virus hidden deep in the nucleus of the cell, was of no help. After the XMRV debacle, I fear that work like that of Dr. Chia’s will be even more difficult to get funded, and the needed replication of his work won’t occur. It’s time for this researcher who really understands what his patients are going through be supported in his research.

By the way, I’m writing as the frustrated wife of a husband who is suffering terribly with ME/CFS. I am also a mental health professional who was skeptical when my husband was first diagnosed but is now absolutely convinced that this is primarily a viral illness, and that Dr. Chia is on the right track and should be taken more seriously by the medical research establishment.

December 13, 2011 at 2:24 am
(12) Roy Burrows says:

Enjoyed reading the article. There are so many points I would like to make but let me just say this; There are many people who point to the number of ME/CFS sufferers and note the frequency of depression and therefore conclude: “There you are! depression causes M.E.” However, I would ask you to consider this; If you had flu-like symptoms, i.e. aching joints, headache, difficulty concentrating etc etc for 1 year, 2years or in some cases 15 – 20 years would it not get you depressed? Hence a common-sence conclussion would be that M.E./CFS CAUSES depression. Just one more point; If you are a sufferer PACE YOUSELF. If you push yourself when your body is crying out for rest then you will pay. In the long run you will have a better quality of life if you find your own level of activity.

December 13, 2011 at 3:00 am
(13) Heide says:

The only people benefiting from the biopsychosocial view are the Big Pharma execs who continue to bring home record profits. Keeping this in the realm of psychiatry keeps us needing drugs to fight our symptoms, when (big surprise) counseling and exercise don’t help us.

December 13, 2011 at 3:53 am
(14) andy jones says:

It s interesting how often I read that sufferers first started to become ill roughly 20 years ago, for me it was exactly the same when first diagnosed with glandular fever (that turned to severe M.E.) in 1991 after post graduate studies. I have often wondered if there was a clue here, because if not where are all the sufferers who caught the illness more than 20 years ago.

I am not a fan of CBT or GET as a CURE for M.E. having been on several private and NHS courses for both in group and one on one sessions over 15 years. These are simply no more than coping mechanisms that enable the sufferer (in some instances) to do more than they could before and gets them to focus on a daily regime to keep them busy and therefore less vocal in their disgust at the lack of help available. They are not a cure and should not be portrayed as such, they are at best a plaster.

December 13, 2011 at 5:35 am
(15) Doc ForthePeople says:

In my years of practice I have seen hundreds of pain sufferers with depressed mood, but only a couple of patients with true clinical depression. One of the features of true depression is anergy or the lack of desire to do anything (it is very difficult to put this in words). Another feature of clinical depression is “social apathy” or having no desire to participate in social activities. These features are exceedingly rare in people suffering from all types of chronic pain and/or ME. Indeed, ME sufferers uniformly have an unabashed yearning to be able to DO things, to participate in life!

As far as the viral aspectg, I believe that someday we will find that there are many forms of this disease, and viruses somehow trigger the (as yet undiscovered) neuro-musculo-skeletal abnormalities that lead to dysregulation of our normally well controlled selves.

The real crime is that the disease of pain is now being trivialized and/or criminalized by so many practitioners and the press, at least in the US. The true nature of this disease requires open inquisition into the scientific basiws and unfortunately, too many in the back rooms of medical power are stuck on trying to blame all of the illness on what is in the patients’ heads!

December 13, 2011 at 7:08 am
(16) jane says:

A finely balanced article, thanks. The news about the Mayo Clinic is depressing, but no surprise. They have a very bad reputation with ME patients already.

It is indeed the conflation of major depressive disorders and ME the neurological disease that is making much of the research (particularly on the psychosocial side) worthless. Even so, GET, in this meta-analysis of pooled data on GET, CBT and Pacing http://www.iacfsme.org/LinkClick.aspx?fileticket=Rd2tIJ0oHqk%3D&tabid=501, harmed over half the trial subjects submitting to it. CBT was rather less dangerous, harming only just under a fifth.

What does the hippocratic oath say? “First, do no harm”!

There are two criteria worth using, the Canadian Consensus Criteria and the International Consensus Criteria. All the others need to go on a bonfire.

To the person asking about people who had ME before 1991, there were many outbreaks and individual occurrences before that date. The Royal Free in 1955 (and some of those are still alive and still ill) Lake Tahoe in 1986 (ditto), and many more.

December 13, 2011 at 7:43 am
(17) Chicklet says:

I had pneumonia which came on so fast I was questioned about it in the hospital. I don’t smoke and never have. I don’t work or live in an environment with smoke or other harmful things to breathe. Then the question, are you under a lot of stress? YES! It was very extreme stress.
Guess what? I never got completely well. After 2 months the hacking cough went away. Now it’s 3 years later…the first 2 years I didn’t even know I had cfs. I was given a psyche eval (at the 2 year mark) and was told that I did not have depression or any red flags or other psychological problems.
My hands down top symptom is post external malaise.
I think that I have cfs due to too much stress combined with an illness that caused my body to be physically stressed at the same time, pushing it over the edge of what it could handle. I can buy into the theory that my body stopped being able to process right, that it’s stuck in shut down mode like when you are sick.
But I don’t buy that exercise makes this better. I didn’t know I had cfs and tried to get into an abridged exercise routine only a couple months in. It about killed me. I layed on the floor after just 15 minutes with 2 lb weights, unable to get up. Not from normal muscle fatigue, but this awful worn out exhausted feeling that came on rather quickly. After I could get up I was useless. I did not feel better for exercising. I tried doing less next time. In the end I had to give up exercising. I just couldn’t do it. It cost me too much. After I quit it took me over a week to recover. Not that I was all better – but just to get to my previous level of fatigue.
I’m up for doing what I can. I learned before I’d even heard of cfs that pushing beyond is a bad mistake. Later to learn it’s called a crash.

December 13, 2011 at 8:14 am
(18) Rachael says:

An autoimmune disorder occurs when the immune system mistakes human cells for intruders and begins attacking them. If ME/CFS (or parts of it) is an autoimmune disorder it’s not alone; in 2001 the NIH reported that approximately 5% of the US population is believed to have one. Virtually every organ and tissue in the body can end up being attacked by the body and over 80 autoimmune disorders have been identified.

Now that the autoimmune issue has been starkly raised by the Rituximab study we take a look at some indirect evidence for CFS as an autoimmune disorder ; if you were to take away the labels and the history and just compared some fundamental aspects of CFS and auto-immune disorders – would you be inclined to fit ME/CFS into the autoimmune disorder category?

http://forums.phoenixrising.me/content.php?501-Is-Chronic-Fatigue-Syndrome-%28ME-CFS%29-an-Auto-immune-Disorder-Rituximab

Excellent article by Cort Johnson – Phoenix Rising

December 13, 2011 at 10:52 am
(19) Dana says:

I’m depressed because I have no energy. Therapy and antidepressants haven’t changed that. I do have immune system abnormalities. Is the immune system too complicated for the Mayo Clinic?

December 13, 2011 at 11:55 am
(20) Nancy A. says:

I have suffered from CFS and fibromyalgia for 25 years. Because of the stigma attached to the CFS diagnosis, I usually don’t tell people I have CFS, although both diagnoses helped me get approved for Social Security Disability a few years ago.

After all these years, it’s very discouraging that researchers are still debating the physical / psychological cause of chronic fatigue syndrome. No matter how much psychological stress a person has experienced, how could that possibly cause the kind of pain and suffering that we deal with on a daily basis, especially those of us who also have fibromyalgia?

Adrienne, thank you for being our advocate and for this CFS/fibromyalgia website. Happy Holidays!

December 13, 2011 at 12:12 pm
(21) Mbloom says:

I have been in the medical field for a long time and have NEVER seen anything come out of Mayo that I could respect. This one caps them all.
There is likely going to be resistance to this disease being accepted as it would leave many in the medical field with “egg on the face” for having shouted to the roof tops that is a non disease. However there is finally a great deal of good research being done and I have hope.

December 13, 2011 at 4:04 pm
(22) Alisa says:

I, too, have had fibromyalgia since 1991 (what’s with that year?). And what’s the connection with Gulf War Syndrome also dating from that time?? Biological warfare experiments gone wrong? Maybe that’s why there is an effort to blame it all on “depression”. Ha! And this illness can and does get worse for some people – the medical community likes to say it won’t. About 3 years ago, my pain and fatigue got MUCH worse after undergoing fertility treatment – which uses synthetic hormones – a decision I now regret. I’m getting to the point where I can barely walk anymore.

December 13, 2011 at 6:12 pm
(23) Ashley says:

I have moments of sadness, anger and frustration which I believe are normal responses to this disease. It is a daily struggle, with no support from the medical community and horror stories from the internet.

I have had CFS for 8 months now, following a year abroad in Ghana where I contracted malaria and typhoid fever. My CFS has me housebound most days, and using a transport chair for any long trips outside. My internist said “Maybe you will get better on your own in a year or so”.

Please if anyone else has had CFS after a malaria and or typhoid fever can you get in touch with me? asinnis@yahoo.ca

December 13, 2011 at 6:12 pm
(24) Ashley says:

I have moments of sadness, anger and frustration which I believe are normal responses to this disease. It is a daily struggle, with no support from the medical community and horror stories from the internet.

I have had CFS for 8 months now, following a year abroad in Ghana where I contracted malaria and typhoid fever. My CFS has me housebound most days, and using a transport chair for any long trips outside. My internist said “Maybe you will get better on your own in a year or so”.

Please if anyone else has had CFS after a malaria and or typhoid fever can you get in touch with me? asinnis@yahoo.ca

December 13, 2011 at 10:35 pm
(25) M says:

I had what felt like CFS for six months. It felt very similar to my horrendous bout with mono ( Epstein Barr) but without the swollen glands Then, I developed shortness of breath. I would just run out of air while talking. Another 10 months and numerous symptoms later, I have finally been diagnosed with late stage neurologic Lyme disease and Bartonella. I strongly encourage everyone with a CFS or fibromyalgia “diagnosis” go to a Lyme Literate M.D. to make sure you don’t have Lyme. If you’ve been sick more than a year, there’s a good chance you’ll test negative, which DOES NOT rule out Lyme as it suppresses the immune system You need to see a doctor who knows Lyme well as it is often a clinical diagnosis that includes history and symptoms. I initially tested negative and was told I didn’t have Lyme by multiple doctors who put their faith in a test that is notorious for false negatives in late stage Lyme sufferers. An LLMD will know how to do a challenge test with Abx to try to get the immune system to start creating antibodies again.

December 15, 2011 at 12:54 am
(26) Charles B says:

These comments come from a physician who believes that the viral and biopsychosocial hypotheses both can contribute to patient self care of the pain and malaise of ME/CFS. However, I believe, based on clinical experience that both inadequately explain the pathophysiology of the pain and malaise. Pain, for instance, can come from neurovascular compromise that limits blood flow to tissues and thereby causes discomfort. The neurovascular pathophysiology can be based on “endothelial dysfuncttion” whereby endothelial cells lining small blood vessels (“microvasculature”) have biochemical defects that cause the microvasculature to have a limitation of blood flow (based, for example, on limitation of blood flow based on vasoconstriction of the microvasculature,,,more but there are too resttrictive character number restrictions.

December 15, 2011 at 12:58 am
(27) Charles B says:

. If this pathophysiology is applicable in the cause of pain then it is also SOMETIMES treatable IF identifiable causes of “endothelial dysfunction” are treatable. ONE (of many) causes of “endothelial dysfunction” is intracellular thiamine diphosphate deficiency in cells that causes a deficiency in a KEY ENZYME, tranketolase. This enzyme shunts glucose oxidized metabolites that can cause “oxidative stress” into much more productive and not destructive pathways. When there is adequate Transketolase activity due to adequate INTRACELLULAR thiamine phosphate there is much lower “oxidative stress” and resultant “endothelial dysfunction”:

Oxidative Stress –> Endothelial Dysfunction –> Microvascular Dysfunction –> Regional Blood Flow Abnormalities –> “Downstream Pathologies” such as pain, mood changes, poor wound healing, dilirium, neurodegeneration, Wernicke’s Encephalopathy….etc.

There is a fat soluble derivative of thiamine, Benfotiamine, that very effectively repletes intracellular thiamine diphosphate (also called thiamine pyrophosphate).

December 15, 2011 at 1:00 am
(28) Charles B says:

Continuing comments:
Recently I saw a patient with chronic pain and fatigue thought to be related to prior Lyme Disease infection. Over a decade he had repeated treatments for Lyme Disease and more recently two months of Q two week IV antibitotic therapies WITHOUT resolution of his pain and malaise. I advised him to take Benfotiamine, gave him a month supply of it and asked him to take 300 mg po twice a day. In two weeks his pain was completely gone for the first time and remains gone over a six month followup period. My cost of the Benfotiamine was 11 dollars for the bottle of 120 caps (150 mg per cap).

Benfotiamine IS NOT a panacea. For some causes of pain related to “endothelial dysfunction” it is very effective as this one example shows even after BIG GUN antibiotic rx did not work. Pain is pain whether it is coming from Lyme Disease, viral infecction, mental stressors, relationship stressors, social stressors, physical stressors or toxins. If that pain is due to intracellular thiamiine deficiency, Benfotiamine can be a godsend. I spend about a quarter of my income purchasing Benfotiamine, Allithiamine (crosses the blood brain barrier that Benfotiamine does not), Pycnogenol 9or less expensive generic pine barrk extract), Co-enzyme Q-10 and handing them out gratis to patients with various causes of pain, malaise and even other neurovascularly caused symptoms (eg disabling hot flashes).

December 15, 2011 at 1:03 am
(29) Charles B says:

Final comments:
. BTW Benfotiamine does NOT relieve disabling hot flashes and again, is definitely not a panacea. Bottom line message: There are different causes of microvasvular dysfuncttion that contribute to the pathology of a wide variety of conditions. The appropriate application of the above OTC’s can have decrease this dysfuncttion and its “downstream pathologies”. I tell medical students to try and figure out the role of the microvasculature in the pathology of your patients (whether they be patients in the ER, ICU, Nursing Home, Outpatient Clinic….etc) and you will more than likely be able to offer them some adjunct if not comprehensive therapies that other physicians will not even conceptualiize as being efficacious interventions.

December 15, 2011 at 1:10 am
(30) Charles B says:

Correction:
The patient I mentioned has been pain free for six weeks, not six months.

December 16, 2011 at 11:16 am
(31) sara says:

I have had (and successfully managed) ME for 18 years. The conditon is physical, not mental/emotional. I’ve used a combination of dietary exclusions (notably sugar), mineral supplements (different ones at different times), and critically: listening to what my body tells me about how much exertion is too much. Obviously a positive attitude helps, but. I know it is a physical condition, because my doctor (private, not NHS) several years ago ordered a blood test, analysing ADP/ATP (energy generation) functions at cellular level. My blood cells have low supplies of the substance that provides energy to the body. I burn it unnaturally quickly. It takes far longer than average to restore it to useable levels. That is a clear description of what ME/CFS is and feels like.

December 16, 2011 at 11:16 am
(32) sara says:

I have had (and successfully managed) ME for 18 years. The conditon is physical, not mental/emotional. I’ve used a combination of dietary exclusions (notably sugar), mineral supplements (different ones at different times), and critically: listening to what my body tells me about how much exertion is too much. Obviously a positive attitude helps, but. I know it is a physical condition, because my doctor (private, not NHS) several years ago ordered a blood test, analysing ADP/ATP (energy generation) functions at cellular level. My blood cells have low supplies of the substance that provides energy to the body. I burn it unnaturally quickly. It takes far longer than average to restore it to useable levels. That is a clear description of what ME/CFS is and feels like.

December 16, 2011 at 11:16 am
(33) sara says:

I have had (and successfully managed) ME for 18 years. The conditon is physical, not mental/emotional. I’ve used a combination of dietary exclusions (notably sugar), mineral supplements (different ones at different times), and critically: listening to what my body tells me about how much exertion is too much. Obviously a positive attitude helps, but. I know it is a physical condition, because my doctor (private, not NHS) several years ago ordered a blood test, analysing ADP/ATP (energy generation) functions at cellular level. My blood cells have low supplies of the substance that provides energy to the body. I burn it unnaturally quickly. It takes far longer than average to restore it to useable levels. That is a clear description of what ME/CFS is and feels like.

December 16, 2011 at 5:03 pm
(34) Leni says:

Jeez, what I haven’t seen yet here in the comments is a question I have. How do we put together an internet petition to the CDC NOT to adopt the British view?

December 16, 2011 at 5:09 pm
(35) Jackie says:

When doctors try to label CFS as a mental disorder or depression it really frosts my tater muffin. I have always been a happy, optimistic person, even after developing fibromyalgia, CFS, IBS, TMJ and whatever else the doctors seem to decide is wrong with my body. I will continue to believe that what caused these conditions was the anaethesia I was given during major surgery, it was like part of my brain was shut down and never re-booted. That was in June of 1996 and everytime I have had to have a procedure done where anaethesia is used my condition worsens. I have told doctors that I will have no more procedures where I am put to sleep, as the last time the doctor said he had to give me three times the normal amount of anaethesia and I was not out properly (as I was screaming in pain and I swung at him, which I apologized for) and he was scared to give me anymore, as he was afraid I would not wake up (which they really had a hard time waking me up with what I was given). I believe anaethesia is not a one size fits all, as with other drugs, and it is what has brought this awful condition on, but I refuse to let depression steal my joy, so I laugh, instead of cry, my way through it.

December 16, 2011 at 5:23 pm
(36) Lucy says:

So, if you have had major depression it isn’t possible you have Fibro, ME of CFS? Baloney! You can’t tell me that only non-depressed people can get any of them. Whether you were depressed before you came down with any of these or became depressed due to having a chronic, life limiting and painful condition matters not a whit.

I’m leaving it open as to what causes my fibro problem. I tend to lean toward some sort of central nervous system problem but I just don’t think the science has come up with a consistent workable hypothesis that can be replicated by multiple researchers regarding what triggers it. Since I also have chronic migraines I think there is a common neurological problem to both migraines and fibro. I didn’t start having migraines until after I developed fibro.

To insist it is all in our heads just makes it easy for physicians to dismiss us as a bunch of nut jobs so that they can justify shoveling SSRI and antipsychotic drugs onto us and then wash their hands. Anything else would require them to actually think and become something other than pill mills. How many of these doctors are actually trained in psychiatric illness in the first place?All to the enormous profit of Big Pharma.

I have found that the only way to manage my fibro is by pacing my activity levels. I have lost 80 + lbs which helps with pain in the joints and therefore decreases that trigger potential. I’ve been taking a gentle yoga class a couple of times a week to try to keep my muscles in some semblance of condition. No drugs have ever been one iota of help and in the case of SSRI, have always put me into serotonin toxicity, a protentially lethal condition. Yet they still try to get me to take them.

I’ve given up on doctors.

December 16, 2011 at 6:37 pm
(37) nancyjean says:

I got a double whammy on this one. I am a PTSD survivor from mental and emotional trauma growing up. My Fibro was mild for years and then it hit hard when I had a severe case of Epstein-Barr. I was legally disabled about 8 years ago. I am a newly divorced woman this past year. My marriage of 20 years involved huge amounts of stress and disappointment. I have notice a significant decrease in my Fibro symptoms since removing myself from an almost hostile situation. I also have chronic depression, inheirited from my father’s family. I have been through hunreds of hours of counseling over the years. What can I surmise of all this? I firmly believe that there is a physical trigger to the Fibro – in my case, the Epstein-Barr attack. I also believe that the isolation and frustration of the Fibro can easily cause depression. I also know that when under extreme amounts of stress, the Fibro can flare for very long periods of time. So ling, in fact, that I was not aware of it until after my marriage ended. I do agree that the British and US camps should stop fighting and pool their knowlege. For me, without doubt, it is a combination of all of the above and requires multiple treatments for the multiple factors involved.

December 16, 2011 at 8:48 pm
(38) Budie22 says:

Well I am not too impressed with anything MayoClinic has to say. They told my husband his double vision was all in his head! It took Park Nicholet Clinic Minneapolis to diagnose his Myasthenia Gravis and the University of MN to confirm it.

December 16, 2011 at 9:24 pm
(39) Bigfoot says:

I was diagnosed with mono (EBV) in July 2007. I never got over the fatigue.

Today is my 28th day without fatigue.

At the time I had been taking an SSRI for a few years when I became ill. Last month I saw a rheumatologist who suggested switching to an SNRI since that would be more stimulating than the SSRI i was taking. I discontinued the SSRI and started the SNRI. The SNRI side effects were too much for me and I discontinued that drug as well. The side effects were so bad I decided not to take anything for a few days to get over them.

After a couple of days I noticed that I did not feel any fatigue. Nor was I getting tired easily. So I decided to just keep going without any drugs.

I am not getting palpitations anymore, I am not getting out of breath.
I have been able to increase my activity. I can do some housecleaning now and some cooking. I have been going for walks.

Was the antidepressant making me that sick all these years? It seems too soon to tell, I have had temporary relief from fatigue before. Time will tell.

December 16, 2011 at 9:28 pm
(40) Cindy says:

Over the last 2 years or so I have gradually exercised. It has taken me a very long time to get to the point of working with light weights, stretching and walking pretty much every day. If I miss more then a couple days it’s like starting over again. So I force my self to exercise. Do I feel better? The only way that I can do this exercise is by taking pain medication. Without the pain medication there is no way I would be able to exercise. I also do brain games every day, to try to keep my brain from going dead.
I am in constant pain and am chronically exhausted. Making my self exercise has not help that at all.

December 16, 2011 at 9:31 pm
(41) BA says:

I’ve struggled for more than 25 yrs and watched as my body accumulated one unusual symptom after another, trying desperately, as do we all, to unravel this mystery and get some sort of life back.

I now think that my brain has changed steadily over that time – that it’s not firing properly, as it used to, affecting our basic body systems in unbelievable, and unbelieved, ways, making diagnosis and treatment impossible because we don’t react like the ‘norm’ anymore. Things have turned off, or changed, malfunctioned. Our depressed immunity trying to survive in ever escalating electrical and electronic fields that enclose us more everyday, and synthetics cluttering our environments and lacing all foods. Can these exposures be contributing to alterations in how our brains (in our weakened bodies) are firing? Causing increasing mysfunction? Vicious circles? So many questions… I now have allergic reactions to most food, even fruit and veg. Why? And so it goes on.

December 16, 2011 at 10:25 pm
(42) 4Real says:

I was sick with CFS for 2 years 24 years ago. I had a low-grade fever the entire time. I had episodic severe joint pain. I lost a lot of hair. Not the sort of things that I would expect CBT to help.

Even though I have been free of CFS symptoms since then, I am permanently ineligible to donate blood to the Red Cross.

The Mayo Clinic’s blood donation website lists no such restriction. The Mayo Clinic needs to make difference between their policy and the Red Cross’s policy loud and clear. People who might need blood transfusions, such as prospective surgery patients, should be given the choice of whether to put themselves in that position of receiving blood donated to the Mayo Clinic. The Mayo Clinic may believe in the biopsychosocial theory, but prospective patients should not have to share that theory.

December 16, 2011 at 10:45 pm
(43) Nitalynn says:

After reading how calcium and magnesium work together to help with osteoporosis I started wondering about the fact that my doctor has increased my calcium intake but not my magnesium intake at about the time my fibro symptoms began. I talked to my doctor about adding it as a supplement and she wanted to check my levels first because I am already on so many meds that she was concerned about adding another. I waited several weeks and then when I could not get hold of her to find out the results I went ahead and picked up a bottle and started taking them. This was last August. The result was immediate and I even managed to work my way off my pain meds. When I finally got another appointment (it seems they had switched me to another doctor without bothering to let me know!) she checked the test results which turned out to be on the low side of normal. Unfortunately as soon as cold weather set in I started to have pain again but I really think it is arthritis because it is in the joints and not as debilitating. I don’t never thought of the magnesium as a “cure” but I think the puzzle has many pieces.

December 17, 2011 at 12:35 am
(44) Deb says:

What saved me was reading From Fatigued to Fantastic by Dr. Jacob Teitelbaum. I went to a fibromyalgia clinic, and they did scads of blood tests. I had hormone imbalances, fatty liver (NASH), low thyroid, low cortisol and testosterone. I also had high iron, and a number of other things that went into the equation. I think Chronic Fatigue Syndrome and Fibromyalgia are not exactly the same for everyone. The treatment needs to be tailored to the individuals needs. Through medication and nutritional supplements I am much improved. Also, one need s to learn to pace oneself. When my physical symptoms were treated, my depression went away– and I was one sick puppy. The hour drive to the doctor was agony, but it was worth it to get the treatment.

December 17, 2011 at 2:54 am
(45) Dana says:

CFS does NOT = Depression! You do NOT have to have the pre-genetics or diposition for it. My daughter and I developed ME/CFS (Mycotoxicosis) after being exposed to toxic mold for almost 15 years not realizing early on that we were even being exposed to Stachybotrys, Aspergillus, Chaetomium and others at high levels. Toxins, chemicals, pesticides, etc. have a prodominent role in most, if not all, illnesses chronic and acute. No one seems to want to acknowledge this fact. Most don’t understand the difference between allergic reactions, chemical reactions (MCS), poisonous reactions, hypersensitivity reactions and anaphalaxis reactions. And most don’t understand that you can have more than one type of reaction at the same time. Also, what has yet to be understood by all those who are supposedly trying to find a clear-cut simple explanation for ME/CFS is that it’s the exposure that happens first which in turn affects / attacks your immune system which makes you more suceptible to many different infections which in turn further more affects / attacks the immune system which creates a domino effect within one’s body that eventually begins to shut down and attack / affect all other systems in the body. This is definately not all in one’s head; those affected are NOT crazy and most are NOT depressed! And those that do have some depression from lack of understanding by doctors, family and friends are suffering from secondary depression NOT primary depression! Get rid of the illness you CURE the so-called depression; it’s simple as that! It’s the Toxins that are killing us and causing so many dis-eases; people’s systems can not handle the bombardment of toxins, chemicals, etc that we are being supjected to on a daily basis from the air we breath to the food we eat to the water we drink and the injections we inject. It’s no wonder there is a rise in Cancer, Autism, MS, Lyme, Heart disease, Diabetes, Fibromyalgia, Infertility, Birth Defects, etc.

December 17, 2011 at 3:18 am
(46) Dana says:

To add and clarify:

I do think a lot of people have a predisposition to ME/CFS but I don’t believe everyone has to be predisposed in order to acquire ME/CFS (Mycotxicosis). If your system has been poisoned by a toxin, that is the trigger to cause your immune system to begin to go haywire. I also agree that ME/CFS is an autoimmune disorder.

December 17, 2011 at 8:45 am
(47) Debbie Cordova says:

I have suffered for four years with CFS. I was diagnosed with Reactive Epstein Barr Virus in Dec of 2007 and told that I would be symptomatic for roughly 4 – 6 weeks. A year later I was still displaying extreme fatigue, sore throat, on again off again low grade fevers and pain throughout my body as well as countless otherphysical inconveniences and discomforts. About 80 percent of the time I feel flu-like symptoms. Another bloodtest was taken and all the titers were very high. They have been high ever since. I recently had an infectious disease doctor, who I went to thinking I might get some good information as to how to treat this and feel better, tell me not to get anymore blood work for EBV because the antibodies would always be present. Common sense told me that…once you’ve had it, the antibodies are always present…but what about the other titers showing active, acute and chronic infection? I feel that those of us with chronic reactive Epstein Barr resulting in CFS have been left out to dry. I am now suffering with CHRONIC FRUSTRATION. Thank you for being there and for providing this a forum that, at the very least, acknowledges that we are really ill. Prayers for more and better research and results. DC

December 17, 2011 at 9:17 am
(48) Di says:

There are so many unanswered questions about fibromyalgia. As with most illnesses it can take many years before research actually confirms or rejects theories. It is not uncommon for research to be lacking in illnesses/diseases that are primarily within the female population. This has been going on for hundreds of years and unfortunately is still a prime factor in research today.
As a health care professional, I think that there are several factors that link to manifestation of fibro symptoms. Can it remain dormant for a period of time and then is triggered by a specific incident/infection/illness or stressor? Are there environmental factors that trigger the illness?
In my place of work there are several females who have developed fibro during their time working there. What is the common factor among these individuals or are there a number of factors? We have joined a research project looking at the issues within our work environment to try to determine if there are common factors: air quality, stress, lighting, etc.
Research can be a confusing long process and can change direction often before reaching a conclusion. It is important that we do not rely on researcher findings until there is sufficient research pointing at specific findings. Research findings do not guarantee successful treatment and/or cure so it is essential that we each find what works best for us and continue to pursue our own wellness without placing too great an emphasis on research.

December 17, 2011 at 11:32 am
(49) John Clayton says:

Bravo for calling out the abominable policies of the Mayo Clinic! Dana (above) asks, “Is the immune system too complicated for the Mayo Clinic?” My answer, as a former patient: “Yes! Without a doubt!”

However, the article implies that this is something new. It’s not. The Mayo gave me this same runaround in 2009. What may be new is that the Mayo’s website now reflects policies its doctors have practiced for years. When I pointed out the discrepancy back then, they admitted that the doctors have no control over the website. In other words: the website is a marketing tool — and at the Mayo, marketing rules.

If you have come to this page because you have recently become sick and are considering how to get treated, let’s be very clear: Avoid the Mayo Clinic! Study this site; Adrienne has written about many other practitioners, such as Dr. Nancy Klimas, who can give you ten times as much help.

December 17, 2011 at 9:20 pm
(50) Edana says:

I sincerely wish I had $1.00 for every pyschological, or psychiatric session I have attended that was supposed to convince me there was nothing wrong with my body per se, but rather with my brain. If this is true, I developed these psychiatric symptoms when I was less that 10 years old. What did happen during that time of my life was having a crop duster less than a block from our house in the San Juaquin Valley of California. In the days before air conditioning and irrigation it was not unusual for summer time temps to reach 115 degrees. The only way to sleep was with the windows open.
In my preteens crop dusting was started just down the street. We hated it because the noise woke us every summer morning at 6:00am. The yellow dusty film that covered everything was a pain because the whole house had to be dusted every day. Guess who had that chore? For 8-10 years I breathed that pesticide daily all summer.
About the time I was 12 I hurt all over my body. My parents dismissed this as a bid for attention. When I moved away to go to college, the pain lessened. At 35 I had a 14 hour exploratory surgery, and I just never recovered.

December 17, 2011 at 9:21 pm
(51) Edana says:

I worked at a very stressful job, lived a stressful home life, and the pain just increased. Then came the fatigue and brain fog.
Somehow I had spent my entire life, dreaming up illnesses doctors could not find. I finally found help and hope in 2002 in Boston with a group of 7 doctors. They found that I had Fibromyalgia, and put me in a physical therapy program at the Rhode Island Hospital of Rehabilitation. For 2 years I did everything they asked me to do and got weaker and weaker. Finally I was dismissed as intolerant to exercise, and failure to thrive. Today I am 65 yrs. old and pacing along with a cocktail of drugs make a life of careful doing. I can do a 1/2 day activity, then rest for two days. No one knows what that crop dusting “stuff” did but in the best of medical terms my Immunologist describes my immune system as “toast”. A simple cold can put me to bed for up to three weeks. This is some physical illness, just no one knows what causes or cures either Fibro or CFS.

December 18, 2011 at 6:53 am
(52) Andrew Porter says:

After a viral trigger, I immediately developed a state of chronic fatigue, made worse by psychological and psychiatric treatments, particularly antidepressant drugs that may me feel extremely ill. Add in exercise, and my symptom intensification was pronounced. Sadly, it was the dogmatic, unproven psychiatric theories that made my illness so much worse.

When a private medical doctor started performing medical tests, these tests revealed a marked neurological malfunction, dysautonomia, consistent with hit and run viral damage. No ongoing infection, no psychological or psychiatric problems as confirmed by a psychiatrist, but a profound metabolic defect in favour of anaerobic instead of aerobic energy transfer. This is clear proof of a metabolic disorder, and a reason for my fatigue, explains why antidepressant drugs are such a disaster. etc.

CFS and ME are descriptive terms, rather than being a definitive diagnosis. Because of this approach, with fatigue being a dominant symptom, there is considerable scope for the proliferation of theories, and that is a major problem. If the dominant symptom was not physical fatigue, then perhaps more progress may have been made, whilst remembering that, according to published work, asthma, MS and Parkinson’s disease were all psychiatric problems until the truth was revealed. Perhaps I/we are going through the same, painful process, instigated by an inadequate medical response to such conditions of ill health.

December 18, 2011 at 9:01 am
(53) Fredda Kaufman says:

I have searched the Mayo Clinic site and the whole internet with various search engines and I can find no mention of the information you have attributed this new stance on chronic fatigue. What is your source?

From Your Guide: My source is the Mayo Clinic site, Chronic Fatigue Syndrome: Treatments and drugs. ~Adrienne

December 18, 2011 at 11:08 am
(54) Alisha says:

For me, personally, I have the Epstein-Barr virus AND PTSD. Add Diabetes and Rheumatoid Arthritis to the mix and you have a lovely life full of being sick ALL the time. You get to let your kids down. You get to miss out on all the important things a family shares together. You get depressed because of all of that. All I want is a CURE!

December 18, 2011 at 11:17 am
(55) Juliesue says:

Adrienne, thanks once again for bringing an important issue to our attention. I wonder if this illness will ever be taken seriously by some in the medical community. Why is this one singled out for controversy? We know that we used to be healthy, and now we are not. I at least take comfort in reading these comments and realizing that I am not alone in my fight, so thanks also to all who write here.

December 18, 2011 at 11:26 pm
(56) Monique says:

Intriguing article. Thanks Adrienne. Although, my fiber- “profile” definitely fits the biopsycosocial theory precisely. For many others, its clearly a viral related cause. I emphatically agree with your subtype argument.

Tried variety of treatments. Antidepressants. Multiple vitamins. Exercise (helps me tremendously but believe that others do not benefit). Bioidentical hormones. Cognitive therapy. Breathing/relaxation techniques. Dietary modifications (decreased sugar, dairy, gluten). Prob others I’ve forgotten.

Cymbalta masks the pain. Vitamin d and cardio exercise helps my brain fog. Have never felt cured. Feel pretty good somedays. But the medical community (including MayoClinic) does boost my confidence in a cure. Believe we’ll continue to share effective treatments with each other to self cure with individualized therapies.

December 18, 2011 at 11:55 pm
(57) Natalie says:

Wow! I am totally shocked and very disappointed in the Mayo Clinic!! For years, I have respected their viewpoints BUT NOT on this sensitive subject!!!!! CFS/ME has TOTALLY changed my life!! No! It’s not because I was abused as a child or some other absurd other reason. If child abuse was the culprit half the country would be diagnosed with CFS/ME!!! That is NOT the case… Scientific research is evidence that there is ALOT more involved.

I am also convinced that there is a “viral/infection” of some sort that is living hidden in bodies of CFS/ME. All those who suffer from CFS/ME we are 1 more day closer in finding the “real” culprit. In the meantime, we can just ignore ignorant people like from the Mayo Clinic. And continue to have faith that the researchers will continue all of their hard,dedicated work for people who live and know exactly what CFS/ME really feels like. Please don’t give up hope in the real answer!!

December 19, 2011 at 4:31 am
(58) Sharon Levin says:

Having been Southern Africa’s Researcher and in practice Integrative Healthcare for 15 yrs after 19 yrs in remission of both FM and CFS/ME, treating all Functional Medicine ailments including Adrenal Fatigue which the Mayo Clinic does not even consider, and is part of many who suffer with eith FM/ ME, I have to say that the research is not sound, but convenient to the Clinics’ dynamics ways of attending to our problems. They have some sound theories, but that is what they are – theories. Viral studies are equally unsound in many ways. The immune system, at risk can only be lowere by anti-biotic treatments, (knowledge that 3 lots reduce ANYONES immuno suppressant adaptogenic ability over a yr. The ‘norm’ of drs practising such medicine is 8 dosages of ant b’s annually, without looking at anything but blood results. I find this practise negligent when an holistic protocol is not followed for the sake of wellness of the patient. Have a restful Christmas, Hannukah holiday season. Sharon Levin http??:www.fibromyalgiasa.co.za

December 19, 2011 at 9:56 am
(59) Michael E. Ottlinger, PhD, DABT says:

I wonder if the recent conference in Ottawa offered any evidence in further support of the viral theory? It was my expectation that new data was going to be presented. I believe that copies of the meeting presentations will be available at some point.

December 19, 2011 at 11:08 am
(60) mimi says:

This is interestiing. I am a medical professional. Many years ago, while going to school, I diagnosed my mother with Epstein Barr Disease.She had many years of fatigue and other FMS/CFS/ME symptoms. I took her to a neurologist, they did a blood test, and she did indeed have EB. The treatment for her was steroids because she also developed a pseudo-tumor of the optic nerve. The tumor resolved, but she went on to develop Parkinson’s Disease.
I think it is very important to find medical practitioners who will do tests to see if there is viral/other involvement. There are fewer and fewer practitioners who will investigate. My mother was sick before all of the biopsych. view took over. Not to say that both very well may be part of the picture.

December 19, 2011 at 1:16 pm
(61) Louise says:

Very disheartened with MAYO. Had this disease since 1987 at age 31. In 1996, urged my Dr to send me to MAYO. I thought they would have MORE answers & solutions. Had many medical tests & even a psych test asking weird questions like “do you like to harm animals or people?” My final Dr to see after a week was a Psychiatrist. He was nice. He told me I didn’t have a mental illness, not depressed but disappointed about being sick. He went on to tell me that where some Doctors believe this is a mental or psychiatric illness, he believed it’s this disease called CFS or Fibromyalgia. He told me I had EBV & HHV6 in my blood. He admitted MAYO did not know how to treat or cure other than by each symptom. He sent me home with a prescription of Amitriptyline. While there, I spoke with at least a dozen people like me who were lost in illness, pain, suffering and scared in search of help, answers, treatment for this weird debilitating disease. Now, I don’t understand HOW the powers that be at OUR MAYO Clinic can come up with this absurd conclusion. I think MAYO clearly KNOWS it is more than what the UK Medical Researches have decided for their British citizens with CFS. I think MAYO does not have solutions or answers for the CFS/FM people that go there for help. My opinion is that MAYO feels they MUST have answers for all the patients that come to them because they are THE – MAYO CLINC. That is there job, to help make sick people better. So, instead of admitting that they can’t make us with CFS/FM better or cured and don’t know how to treat people with CFS/FM – they go with what they think they can treat more easily. Maybe even less costly to them with this idea of it being biopsychosocial. SO disillusioned with MAYO. BTW, a couple of years later I had a spinal tap that showed EBV in spinal fluid, so the dang virus broke the blood brain barrier. It is VIRAL VIRAL VIRAL creating a domino effect of medical problems on our whole body as time goes by.

December 19, 2011 at 5:09 pm
(62) jeanie says:

I think we can look for one cause until the cows come home and all we are doing is spining our whells.
while mast cell activation and degranulation or non-degranulation effects may not be the whole story it’s very possably part of the cause
and if you do some research on what causes mastocytosis, mast cell disorders, you’ll find there are many causes, includeing molds,toxins,bacterias,voc’s + do a search on “virus,mast cell”
chronic and/or acute exposures to noxious+ substances causes chronic mast cell activation, and other chronic cell activation.

theres even fatique with mast cell disorders.
mast cell activation has been linked to fibromyalgia, CFS, nerve demylination,vascular, + much more.

Florence Nightingale said there are no diseases, just groups of symptoms with a name put on them.
there is a process involved here, it has to do with exposure, mutiple exposures,chronic exposures,acute exposures and the bodily responces to the substances involved in these exposures
which can affect many organs,systems and pathways.
includeing the brain.

theres even info. out there that if you do have a virus thats inactive in your body, exposures to other noxious substances can possabily activate that virus, same with lyme.

December 21, 2011 at 12:57 am
(63) Justin Reilly, esq. says:

The mayo clinic has had this psychogenic view from day one. Nothing has changed.

“I think different groups of researchers are studying different conditions altogether.” Obviously! Why don’t you mention that the reason for this is that it is intentional trickery on the part of CDC and the Wessely school? You make it seem like they’re just misguided and that they will change if you point this out to them. We’ve been trying that for decades. We need to beat the drum very loudly about the fact that we are intentionally abused.

And for the dozenth time, please call the disease ME or at the very least “CFS”- you use ‘chronic fatigue’ in the title of your blog and domain name. This just helps our abusers!

January 3, 2012 at 11:02 am
(64) Jane says:

In my case what I really have is PTSD caused by long term, severe emotional abuse in childhood. In some ways the abuse was subtle and I firmly believed I had a normal childhood. It took 10 years of intensive therapy and a further 7 years of other healing treatments before I could finally face the truth.

I have no doubt as the the cause of my M.E. What strikes me is how long it took for me to stop denying the reality of what happened to me, even with intensive therapy (about 17 years).

I’m not saying that all M.E. is caused by abuse in childhood but I think it is a significant factor. I think the damage caused by emotional abuse is still not recognised fully. I firmly believe that emotional abuse in childhood lies behind many cases of M.E. and (this may be controvesial) that many M.E. suffers are in denial about that (as I was for so long).

June 6, 2012 at 1:44 pm
(65) Rostov says:

Of course, you are assuming that these patients can ever be successfully segregated into sub-groups or that there won’t be some classificatory violence done in the process. At some point, I think we have to accept that this mind/body paradox is never going to be satisfactorily resolved. Either or or thinking is troublesome, but at the same time we can’t wish away a genuine philosophical antinomy by just asserting that it its “both.”

July 20, 2012 at 6:55 pm
(66) primal burn says:

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November 19, 2012 at 6:37 pm
(67) Donna says:

I have had ME/CFS for 20 years. I have had elevated EBV and CMV. I took the anti-viral medicine Valcyte and Valtrex and my viral levels came down to almost normal and I was able to go into a “remission” that allowed me to go back to a 28 hour a week job that required cognitive thinking and physical activity. I was able to sustain both for more then 5 years. I am at least one of the subsets that the viral theories work. Thank you Dr. A. Martin Lerner. Keep up all the data research.

December 11, 2012 at 7:47 am
(68) Nick says:

Why this constant battle between the physical and metaphysical? The human brain is physical. I was abused as a child, my immune system was weak, I then suffered from Epstein Barr virus, then I was bitten by a sheep tick, Herpes 1 and 2, malaria and acne, my life was full of stresses and abuses. My immune system was in crisis. These infections all hide away in interesting places like nerve ganglions and come out to party every now and then. I have a feeling that getting rid of bacteria would not solve the chronic infection from the viruses so it would make very little difference. Counselling can help the mind as can training to manage anxiety, I’ve done both. It doesn’t get me off the couch I live on though. I believe that chronic infection does the damage regardless of what specific infection it is, so it could be EBV or XMRV, or Herpes6 or Lyme it’s all just chronic infection to the immune system. The name and social security number of the virus, parasite or bacterium is irrelevant.

December 17, 2012 at 10:59 am
(69) randy says:

I have had CFS for about 6 years now. I’m 34 now and I have very slowly been getting better. When I first got sick it was sudden and I went and got a mono test a month later and tested positive for EB. So I thought I would get better soon but to this day I still deal with the symptoms. My symptoms are: weird headaches/pressure in my forehead and behind my eyes, feeling warm, sore throat, slight dizziness, stiff neck, drinking alcohol doesn’t feel all that good. I find that it cycles through my body and my body gets better at handling it–although very slowly. Right now I’m having a bout and it’s lasted about 6 weeks…but it had been over a year since I last felt this lousy. Still, my good streaks now I still do not feel perfect like I used to before I got sick. Keeping my mind positive is very important because it doesn’t help to think about it all the time. During my good periods I don’t think about it at all! I play volleyball and can play just fine even when I’m not feeling well–that in itself is worth alot! I am a firm believer that it is viral. If EB is related to Herpes–herpes virus is always in you and seems to reside in my spine where it goes in and out of remission. I haven’t tried Valtrex or anything yet but I think it may be worth a shot. But, for now I’ve been leaving it to my body to fight–since my body is getting better at dealing with it. I’ve noticed that as time goes on what once were my good days are now my bad days. Also, the bad days lasted longer than the good. I might have had one good day back then but now I go for months before I have a “bout” and that bout lasts for weeks. The high from exercise is very important and is a huge normalizing factor. By far the headaches are the worst symptom then second would be the sore throat. I think with all of us we all basically have the same symptoms but of course all of our bodies handle the sickness in different ways.

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January 14, 2013 at 11:15 am
(71) Ahouse18 says:

Thank you for this post! I was diagnosed with cfs a few months ago at Mayo (they’re my local care provider). This week I was supposed to attend “patient education” that would have been 8 1/2 hours the first day, and four hours the next two days, with an exercise coaching appointment on top of that.. My cfs is really episodic, and I know just going to something like that for 8 1/2 hours would be enough to send me into a severe episode. I’ve decided not to attend. The diagnostic appointments were really disheartening in terms of how they handled them (even the location sucks – it’s in the lower level of the psych hospital at Mayo).

So, for today, I am doing what I know helps reduce the frequency and severity of my episodes – keeping up a strong meditation practice – and not subjecting myself to nearly 20 hours of outdated information delivered in a way nearly guaranteed to make me sicker. I know that there is some social-emotional components, but my illness started after a flu epidose 5 years ago, and is impacted by the level of activity and exercise I do. Glad I’m not alone.

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March 28, 2013 at 12:43 am
(74) Sue says:

I have suffered from what appears to be cfs since 2009 following a new ebv infection. I too had previously taken an sari for depression for 7 years. In addition I was diagnosed with hypotyroidism in 06. Since November 2012 I have been off of anti depressant (Sri, and the snri meds that were tried after ebv diagnosis). My fatigue is improving and other symptoms are disappearing (muscle pain, aches, anxiety etc.). Also, my thyroid function is improving and that med has been reduced. So why do doctors not realize that, since ssni’s and snri’s are known in clinical studies to impair thyroid function, and CFS/me symptoms and thyroid symptoms are nearly identical, that it might be these drugs that are the CAUSE. Of the cfs/me? After all, how many more are treated with these drugs than were diagnosed with Cfs/me. 25 years ago? Could we just be excaerbating an already existing condition and lengthening recovery by months or years with these drugs? It seems that a drug which effects the hormone levels within the brain might well have a side effect of ME.
But if pharmaceutical manufacturers were to tell us that this disabling inflammation of the brain would happen, we wouldn’t buy their drugs, and md’s who treat mental health conditions would have to admit that they were responsible in part for harming thousands of people. So the medical community can’t help us without hurting themselves, their pride, and their pocket books. Thus the controversy and blame game will continue endlessly to protect practitioners.

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January 9, 2014 at 5:52 pm
(84) Nat says:

I strongly beleive in the viral aspect. I have been ill for 4 years after an acute illness. Within 10 months I was already in a wheelchair. I did a lot of research and traveled to the US to get help. Finally we found out the cause of my CFS. I’m one of the lucky subgroups with EBV/HHV6 who responds well to Valcyte. Although my life is still very limited, I am no longer bed ridden. Follow my Valcyte journey on my blog http://forums.phoenixrising.me/index.php?entries/valcyte-2013-9-months.1475/

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