The Daily Need

The chronic fatigue syndrome Rubik’s Cube

Photo: Flickr/o5com

Two new studies released this week have thwarted hopes that a cure for chronic fatigue syndrome may be imminent.

After a 2009 study linked chronic fatigue syndrome, or CFS, to a virus called XMRV, some sufferers hoped the link would lead to a cure. But two studies published this week in Science refute the initial link, claiming it was the result of laboratory mistakes. The authors of 2009 study stand behind their research.

“Like falling down a rabbit hole”

The Centers for Disease Control and Prevention estimates that at least one million people in the U.S. have CFS, but that the number could be as high as four million. People with CFS usually have their onset around puberty or in adulthood. The illness is harder to diagnosis in younger kids.

CFS is applied to people experiencing at least six months of severe fatigue, impaired memory and other symptoms like dizziness. Because there is no test to diagnose it and no specific treatment, it’s classified as a syndrome, and not technically a disease.

“It’s a diagnosis of exclusion,” said Kimberly McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America. “Doctors say it’s kind of like Beethoven’s first symphony, you know it when you hear [it].”

McCleary says that people with CFS describe their first experience very similarly. They became dizzy and the room began to spin. Pain shot through their limbs and they had to sit down. “The rug is pulled out from them health wise,” she said.

This dramatic description by patients is where a lot of the viral research around CFS, such as the studies released this week, comes from. Similar to what often happens when people get viruses like malaria or the flu, people with chronic fatigue know exactly when they started to feel sick. But unlike malaria or the flu, there is no specific treatment and no end in sight.

One of the defining symptoms of CFS is post-exertional relapse, where even a very modest amount of physical and emotional activity can lead to a relapse of a person’s onset of symptoms and makes the illness worse. This can be triggered by a trip to the bank, picking up the kids at school or paying bills. People with chronic fatigue also experience dysfunctional immune systems.

“It’s like falling down a rabbit hole,” said McCleary. “With CFS, there is a swift decline without any resolution.”

New studies and treatments offer hope

McCleary and her organization are waiting for more research to take their position. The National Institutes of Health is funding two larger studies that will give more definitive answers on whether there may be a links between a virus, geographical distribution and CFS. One of the studies will look at blood samples from select labs across the country. Results are expected to come out later this year.

Most of the people who study CFS also agree that there is likely a genetic link. “Chronic fatigue seems to run in families, especially [between] mother and daughter,” said McCleary.

As far as known treatments for CFS, individualized therapy seems to be the best approach at this point. Drugs like blood pressure medications work well for some people with CFS who have a hard time regulating blood pressure control. Dietary issues also contribute to managing CFS because most of a person’s blood is involved in digestion.

According to McCleary, some doctors are using a holistic approach in addition to medication. Simple remedies include correcting posture to promote blood flow or elevating a foot in bed to restore balance.

“Chronic illness is not sexy,” said McCleary. “No matter how [these studies on] CFS turn out, it has brought a level of visibility [to the illness].” The media focus around these two new studies should be a wake-up call to physicians, advocates and researchers to continue to solve what McCleary calls the CFS “Rubik’s Cube.”

 
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Comments

  • Filipslady2

    My Chronic Fatigue is gone. I was diagnosed with Autonomic Nervous System Imbalance and put on a refined-carbohydrate-free diet. Within a week all symptoms of CFS and Fibromyalgia were gone.

  • Filipslady2

    My Chronic Fatigue is gone. I was diagnosed with Autonomic Nervous System Imbalance and put on a refined-carbohydrate-free diet. Within a week all symptoms of CFS and Fibromyalgia were gone.

  • Anonymous

    What does “Dietary issues also contribute to managing CFS because most of a person’s blood is involved in digestion” and “elevating a foot in bed to restore balance” mean?

    I assume that “Drugs like blood pressure medications work well for some people with CFS who have a hard time regulating blood pressure control” means that even though no one has any idea how to treat CFS itself treating the individual symptoms sometimes improves the severity of those symptoms.

    I am disappointed in this article, I was hoping to share it with a friend who was recently been tentatively diagnosed with CFS, but it’s just such shoddy work. For example, the quote about Beethoven and the description of the sudden onset contradicts the implications of a diagnoses of exclusion. A diagnosis of exclusion means that many tests have been done, much time has past, and nothing else fits. Some people spend ten years before they arrive at it. This article gives the impression that CFS is quite easy to spot.

    Even article’s conclusion is bizarre: isn’t it the recently concluded studies — the ones that refuted the previous findings of a virus as a possible cause — that have brought attention to CFS? I am glad to hear of the two studies underway though, perhaps they’ll find something that’ll bring my friend relief.

    Although, it’s by no means definitive, there is a test to help diagnose CFS, you can do a Mitochondrial Function Profile: http://www.drmyhill.co.uk/wiki/Mitochondrial_Function_Profile

    My friend blogs very articulately about her medical condition: http://emotionalumbrella.com/ (Yeah, I know, it seems as if I am her plugging my blog, but no. Indeed, I have my own blog, by all means check out my profile.) if you’re looking for info on CFS you can find a lot there.

    For fucks sake, you’re PBS, if you’re going to write about something that I “need to know” put some effort into it.

  • Guest

    Moderated?

  • Rhonda-Elaine Bonney

    Thanks for the news. I wonder what the Red Cross’ reaction will be to these results? I was quite unamused to be excluded from giving blood earlier this year because of my CFS…like we sufferers need to feel any more ashamed and excluded from society.

  • http://www.facebook.com/maidenshade Jennifer Swan Hopkins

    This makes me want to cry because it explains so precisely my experience, ESPECIALLY the last paragraph.  I also have Sjogren’s and fibromyalgia.  These along with the CFS have worked together to create a debilitating, silent and invisible mess of my life (physically, financially, emotionally) that others condescend and obviously doubt the validity of.   It really sucks to feel old from 40 on and be expected to live normally (work, exercise, etc.) because “you don’t look sick” or “NOW what’s wrong with you”.  

    To all of you doubters, HA – here’s my proof!  No, I am NOT lazy, crazy, or acting.  This validation is like a weapon against the ignorance.
    —-
    “McCleary says that people with CFS describe their first experience very similarly. They became dizzy and the room began to spin. Pain shot through their limbs and they had to sit down. “The rug is pulled out from them health wise,” she said.

    This dramatic description by patients is where a lot of the viral research around CFS, such as the studies released this week, comes from. Similar to what often happens when people get viruses like malaria or the flu, people with chronic fatigue know exactly when they started to feel sick. But unlike malaria or the flu, there is no specific treatment and no end in sight.

    One of the defining symptoms of CFS is post-exertional relapse, where even a very modest amount of physical and emotional activity can lead to a relapse of a person’s onset of symptoms and makes the illness worse. This can be triggered by a trip to the bank, picking up the kids at school or paying bills. People with chronic fatigue also experience dysfunctional immune systems.”

  • Sequimbloomers

    To Filipslady2–You were extremely lucky. Most of us have tried this and a thousand other things without improvement.  I hope your improvement holds.

  • Patience

    The CFIDS Association does not speak for me nor many others . I have seizures, spinal pain, inflammation in my brain and lesions, headaches, nausea ,difficulty walking , endocrinological issues and an immune system that can’t fight . I pick up everything . I would never donate blood . And I look forward to positive studies being published soon. XMRV is not contamination . And a much better description of what neuro-immune disease is can be found at http://www.anida.co

  • X+

    The CAA doesn’t EVEN begin to speak for me.

    And by the way, the contamination studies are leaving out one very important bit in their work and prior discussions. 

    Antibodies to a gamma retrovirus in patient sera.
     So far this particular issue has been oh so conveniently ignored or glossed over  by  those who would bury the entire retroviral connection.

    John Coffin (Tufts University), one of the loudest voices in the Contaminationist cadre , publicly stated at the NIH “State of the Knowledge Conference” that he had no explanation for the antibody issue and rapidly changed the subject.

    Sign me,
    XMRV +

  • Not a CAA fan

    Kim McCleary is the biggest obstacle there is to increased funding from patients for research into CFS.  She has alienated nearly the entire CFS patient population with her “inside voice.”

    Check out this poll on the most CAA friendly patient forum there is: http://phoenixrising.me/forums/showthread.php?10169-Caa-poll/page2&highlight=mccleary

    If the CAA was really serious about raising funds for research they would let McCleary go.

  • Jack

    Lol ‘…alientated nearly the entire CFS patient population…’

    Don’t you mean the 179 people (patients?) who happen to have voted and who are members of PR who answered that the CAA needed to change direction etc., and not the ‘CFS patient population?

    Not to split hairs but generalisations tend to confuse an already confused picture.

    14 years since my diagnosis, and multiple confirmations since…

  • Jack

    You might like to listed to Prof Ranciello’s little chat recently about these  very things.

    I am no scientist – but it did help me to better understand the papers and the claims being made about the place:

    http://www.virology.ws/2011/06/05/twiv-136-exit-xmrv/

  • Not a CAA fan

    Yeah Jack, I was referring to those 179 people (in comparison to the 6 that think everything at the CAA is just great or the 9 who think there are problems but nothing worth worrying about).  So with those 15 people we’ve probably covered the board CAA’s board and their staff.  I was also referring to the 13,000 post thread on the CAA and how poorly they have represented the sickest of the patient population and the recent Chase giving event where 60% of those who voted for the WPI would not do something as simple as click on a second button to vote for the CAA.

    You know Jack, you’re right.  The CAA should just keep doing what they  have always done and ignore the patients (who as we all know would rather complain than see progress – right?) as that’s worked so well for the CAA in the past.

    Jack, I’m glad to hear your satisfied.  I hear KM is satisfied as well with her $175K a year salary (the top three salaries at the CAA account for something around 40% of the entire CAA budget – care to check those figures as well).

    I’m not arguing that the CAA can’t do good work.  They have provided seed money for some important small scale studies.  My point is that given the massive pent up need/demand, they could be doing so much more if they had the support of the wider patient community (a million people and their families!).  Since they stopped their disastrous alliance with the CDC, the CAA’s budget has all but disappeared.  What little they are doing is happening in spite of KM, not because of her and the patients as well as the scientisits working on this disease are paying for her refusal to put progress on this disease first and step aside.

  • Mindy Kitei

    The author wrote: “According to McCleary, some doctors are using a holistic approach in addition to medication. Simple remedies include correcting posture to promote blood flow or elevating a foot in bed to restore balance.”

    This particular problem–poorly explained by Alexandra Nikolchev and Kim McCleary–is that many CFS patients suffer from severe autonomic dysfunction. What that means is that sitting or standing causes the blood pressure to plummet precipitously. That is one reason why many patients spend most of their time horizontally. It’s not a “posture” problem. It’s a severe dysfunction of the autonomic nervous system.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com

  • http://www.cfscentral.com Mindy Kitei

    The author wrote:  “According to McCleary, some doctors are using a holistic approach in addition to medication. Simple remedies include correcting posture to promote blood flow or elevating a foot in bed to restore balance.”

    This particular problem–poorly explained by  Alexandra Nikolchev and Kim McCleary–is that many CFS patients suffer from severe autonomic dysfunction.  What that means is that sitting or standing causes the blood pressure to plummet precipitously.  That is one reason why many patients spend most of their time horizontally.  It’s not a “posture” problem.  It’s a severe dysfunction of the autonomic nervous system.My comment was deleted.  So I’m reposting.  Please do not delete this comment again.

    Mindy Kitei
    CFS Central

  • Spencerjonesy

    See “An Open Letter to Victims of Chronic Fatigue Syndrome: How I Beat CFS and
    Returned to a Normal Life After 20 Years of Suffering” at this link: 

    http://secretsofnaturalhealing.blogspot.com/2011/01/open-letter-to-victims-of-chronic.html

  • caro

    I have Autonomic Nervous System Imbalance, Hyper-active….no one really acknowledges this disease. I have found it out on my own ….Filipslady2, you are very lucky, i too have quit carbs, sugar, gluten…..ect.  i do feel better, with the help of a beta blocker. But it is not gone, i have all the symptoms of this article. Good to see at least something written about it, gives me a shot at knowing i am NOT CRAZY.

  • caro

    i am reposting this, as i cant find the one i wrote. I too have an Autonomic Nervous System imbalance.(Hyperactive)  no one really wants to acknowledge this in the medical field that i have found. I have also cut out sugar, carbs, gluten….etc. i do feel better, with the help of a beta blocker. But this is not gone, and is a terrible silent disorder to deal with on a daily basis. I have almost all the symptoms in the article, it’s nice to see someone writing something about this. Helps me to understand i am NOT NUTS. Just want my life back…..

  • Jill

    Kim McCleary states: “It’s a diagnosis of exclusion. Doctors say it’s kind of like Beethoven’s first symphony, you know it when you hear [it].”This is a stunningly ignorant statement. It is contradictory on its face. A diagnosis of exclusion requires complicated time consuming elimination of other conditions.  If it is super easy to recognize and diagnose then the extensive R/O would not be necessary and would not be a diagnosis of exclusion. Kim is also quoted as calling it “chronic fatigue.”  While the approach of the “CFS is not chronic fatigue” is not effective and actually pretty absurd, even she should know better. CFS itself IS a rubik’s cube by nature. It is a broad category based on the ubiquitous, undefinable symptom of fatigue. The CAA continues the fragmentary, contradictory and even dismissive portrayals. Kim’s meaningless, garbled rhetorical flourish at the end is typical. The CAA has been a major impediment.

  • Meg

    I have Lyme disease. Had it for years, undiagnosed. It’s great to know you’re NOT CRAZY, after all! Good luck, friend.

  • Cottagesweet

    Celiac disease is a number one cause of CFS. If only the medical establishment would look into this disease and start diagnosing people correctly.

  • Cottagesweet

    Jennifer, please look into the possibility you have celiac disease. Check it out on celiac.com. I know you are not crazy…it is real.

  • Cottagesweet

    Patience, please check out celiac.com. You have classic symptoms of celiac disease. A very treatable disease and no meds.

  • Cottagesweet

    Sequimbloomers, most people who think they’ve tried what Caro did and it didn’t work for them, didn’t do it right. Gluten MUST be avoided on a continual and strict basis, no cheating, and cutting out everything that has gluten contamination. Too many products are contaminated with gluten and people using them don’t know it.

  • Peter Wachtel

    CottageSweet,

    Your point about the relevancy of celiac is 100% correct. However, I don’t think you need be concerned that it is being overlooked. I have not heard of a single CFS specialist doctor that doesn’t routinely test for this right from the very first patient consultation. 

    PeterW

  • Bebeblooz1955

    All I know is that I can pinpoint the exact time My life took a turn and I too,fell down the rabbits hole.It started with a case of strep throat and when soth from there.I had a promising and lucrative career and was at My happiest in life. I was diagnosed w/depression,Epiepsy and dozens of other things because the drs. did not know what to call all these symptoms.I am better now,20 years later but only because I do not work outside the home,expect when I get even the sniffles that I’m going to have to be on bedrest and that everything takes twice as long to heal from.Everything I want or need to do has to be rested up for and cut in half.Anybody who thinks this is all in ones head or not so bad should think about this-What would You feel like if one day  You had to stop doing work You loved,be unable to care for Your family,spend at least once a month for decades at various drs. offices,suddenly become allergic to a hundreed things You never were before,and to top it all off-be told You probably wanted an excuse to quit working..This is a baffling and cruel disease.

  • caro

    I know what you are going through and am sorry you are suffering. I have not been told i have CFS, but i know i have Dysautonomia, and it is very similar. I went through most of what you just described. I try to thank my lucky stars it is not something really worse. Thats how i get through it.   SIGH…..  thanks for posting.

  • guest

    That’s awfully selfish. Whether it is XMRV or MLV there is a high chance that we are suffering from a communicable disease of some form. As a CFS patient, I don’t know what is causing this but I would never want to knowingly or unknowingly pass it to someone and give them this life sentence.