Tag Archives: CFS

MS vs ME/CFS: A “Fatigue” Disorder No More?

I subscribe to Cort Johnson’s “Health Rising” blog.  He has taken up the cause of those suffering with ME/CFS for a long time (he is one of the millions of patients).  As in one of my recent posts, the plight of sufferers of Myalgic Encephalomyelitis (ME) has been taking up space in headlines of top newspapers.

The current post on Cort’s blog, speaks to the similarities between MS (Multiple Sclerosis) and CFS (Chronic Fatigue Syndrome).  CFS is a misnomer for ME (Myalgic Encephalomyelitis); however, CFS seems to be a more recognizable name, since its coining by the CDC many years ago.

The issue that Cort addresses in this latest post is the “fatigue” suffered by patients who have the two diseases:  MS and ME/CFS.

He states:

Multiple sclerosis (MS) ranks amongst the most fatiguing disorders known.  Both ME/CFS and MS are fatiguing disorders – but is their fatigue similar?

 It is a major topic for research:  there have been 10 research studies in the last 5 months into illnesses with “fatigue” in their titles or because they are known to create abnormal, exhausting fatigue in the patients!

 

Cort goes on to describe the differences and similarities between MS and ME/CFS regarding:

  • Severity;
  • At what stage in development of disease does fatigue start to occur;
  • Types of fatigue;
  • What causes the fatigue to appear at different times of day;
  • Does weather cause changes in severity of fatigue;
  • How does exercise regimens affect patients’ fatigue;
  • How does exercise affect pain experienced by patients;
  • What other actions contribute to fatigue?

The word “fatigue” is a word that really doesn’t properly describe the bone- muscle- nerve-deep total exhaustion (and pain) experienced by ME/CFS patients; and yet, it is used offhandedly by the medical community, some scientists, the governmental agencies who are charged with caring for the health of their citizens, and others who are incapable of understanding the type of “fatigue” meant.

As part of his conclusion, Cort states:

Despite both disorders being associated with high rates of fatigue, people [with] ME/CFS and multiple sclerosis had very different responses to exercise – and display very different types of fatigue. The fatigue in MS is omnipresent, but is not greatly affected by exercise. The fatigue in ME/CFS is..

 

Diagnosis: Chronic Fatigue Syndrome for Julie Rehmeyer, Science Writer for the Washington Post

Prior to reading this post, please be aware that the term, “Chronic Fatigue Syndrome,” is used by a small contingent of the medical community who might be aware of the medical condition.

Most do not know of it by its actual proper and medically correct nameMyalgic Encephalomyelitis (M.E.).  It is incorrectly referred to as CFS, Chronic Fatigue Syndrome or simply, Chronic Fatigue.

I was “rummaging” through my Twitter account, when I came across a tweet from “Canary Film” (Twitter handle, @canaryfilm).  I have a vested interest in the making of that still-in-production film entitled, “Canary in a Coal Mine.”  I supported it, because my daughter has M.E.  The link in the tweet brought me to the Myalgic Encephalomyelitis Daily.

There are several posted articles relating to Myalgic Encephalomyelitis, of course, and a couple of the headlines stood out to me:

  1. What is chronic fatigue syndrome and why aren’t we doing more to treat the illness?
  2. How the definition of chronic fatigue keeps changing.

Both articles, dated October 6, 2014, were written by Julie Rehmeyer, Science Writer, for the Washington Post.  In the first, she describes her physical ailments she was suffering while she visited her neurologist, and what she describes are some of the symptoms suffered by M.E. patients.  Since M.E. is a multi-symptom disease, not all of the patients suffer all of the symptoms all of the time.  She also states some doctors have little understanding of the condition and are skeptical that it exists.

In the second article above, Julie did her research and found out about how the change occurred from the original, correct name of the disease, Myalgic Encephalomyelitis, to the CFS misnomer.  Julie also describes some part that the CDC played in this unfortunate renaming of the horrible disease.  (There is more to the CDC involvement than what she mentions).

I personally feel very badly for Julie, that she received this diagnosis.  I see, through the gradual – over the years – increasing of this debilitating disease, the toll it’s taking on my daughter.

 

Posting On Her Blog Took All the Strength She Had

A very special lady is near death.  Her name is Brooke.  She has M.E. (myalgic encephalomyelitis).  When she knew she was going to die from this disease, she decided, at the beginning of this year, to document her experience in a new blog titled, “Documenting M.E.

It has been quite an experience to read her posts.  They took all the sparse strength she had.  Her Mom supported her decision to do this.  She no longer has the strength to post on her blog, but her Mom has promised to alert her followers as to her condition, or death.

A very brave and courageous young woman.

Here is an excerpt from one of her early posts, in which she describes the difference between M.E. and CFS (Chronic Fatigue Syndrome) and how the two became mistakenly intertwined.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain.

Myalgic Encephalomyelitis got its name long ago based on what experts saw in patients with the disorder, as well as the autopsy results of many of these patients. What the autopsies showed was inflammation of the brain and spinal cord, deterioration of the dorsal root ganglia, and more. The name Myalgic Encephalomyelitis means “muscle pain and inflammation of the brain and spinal cord.” It’s a perfect fit. In 1969, the World Health Organization recognized this fact and officially classified Myalgic Encephalomyelitis as a neurological disease.

Then the US got involved. In the 1980s, there was a breakout of ME in the Lake Tahoe area. The US sent a couple people to investigate. These individuals refused to meet with any patients, look at blood samples, or do anything productive. They scanned a couple files, then spent the rest of their trip skiing and relaxing. They returned to their jobs with the official conclusion that there was nothing to worry about. Soon after, the US formed a committee to discuss the illness that caused the outbreak. There was not one single experienced ME expert on this panel. Rather than call the illness by the name already recognized by the WHO, the US came up with the name Chronic Fatigue Syndrome. This is where the two names became linked.

However, the diagnostic criteria the US chose to diagnose CFS is very simple and absolutely cannot be used to correctly diagnose ME. In order to be diagnosed with CFS, a person must have fatigue lasting 6 months or longer which worsens after exertion and is unexplained by any other illness (technically this alone should rule out everyone with ME, whose fatigue is explained by a WHO recognized illness). Also note that CFS is a syndrome, meaning a collection of similar symptoms, as opposed to a specific disease process. It is not and was never intended to be seen or treated as one specific illness. For a doctor to look at someone and say “You have CFS, and there is no treatment for it” is wrong. You cannot treat CFS because it is not a single illness, but a whole collection of illnesses not yet diagnosed in the people carrying the label. Think of all the illnesses out there that cause some level of fatigue. People from all of those illnesses are being misdiagnosed with CFS every day. This is why researching CFS is a waste of money. You cannot define it or find a single cause or treatment for it because there is no single “it” to research. This is CFS. “It” is fatigue from every cause under the sun, not yet diagnosed, often because doctors are under pressure not to order the expensive tests necessary to find each person’s illness.

ME, on the other hand, is a distinct, clearly diagnosable neurological illness, similar to MS (for a list of similarities between the two, click here). It is not a diagnosis of exclusion like CFS (ie, “you can only have this if nothing else explains your symptoms”). Just like other neurological diseases, it is possible to have both ME and other illnesses, even those with similar symptoms, as long as you test positive for all conditions present. And yes, there are specific tests which can diagnose ME with a high degree of accuracy – higher, in fact, than for many other neurological illnesses, such as MS. Furthermore, studies have shown that less than 1 in 10 people diagnosed with CFS actually have ME. That means 90% of CFS patients have something completely different from ME. This makes combining the two terms not only highly inaccurate, but also extremely harmful to both patient groups involved. By taking media attention and the precious few research dollars intended for ME and spending it instead on CFS, it leaves those of us living with this horrendous disease with literally no voice and no hope for a better future. All our research dollars are being spent on people who don’t even have our disease! What hope for a better future does that leave us? What hope for a cure or decrease in our suffering could we possibly have when researchers aren’t researching our disease at all, using our valuable resources instead to chase the mirage of conditions included under the CFS umbrella?

For CFS patients, linking their illness to one they do not have keeps them from finding out the true cause of their symptoms. Most fatigue producing illnesses have at least some treatment available. CFS patients are being denied appropriate treatment by doctors who are content leaving their patients with a label which basically says “I don’t know what’s wrong with you, and I’m not going to search any further.” One study found that a whopping 30% of individuals suffering from Major Depression are misdiagnosed with CFS. 30%!!! That’s unforgivable! Especially considering Major Depression is a highly treatable condition. There have also been people with cancer, MS, Lupus, Lyme disease, AIDS, and many more diagnoses, all misdiagnosed with CFS and left to suffer (and many times, worsen) on their own. If you are living with a diagnosis of CFS, I cannot urge you strongly enough to keep pushing for the real answer behind your symptoms. Keep seeing doctors until you find one as determined as you are to find your true diagnosis. Don’t give up! You’ll never find out what treatments are available to you until you first discover what is truly behind your symptoms. Do not, by any means, accept the non-answer of CFS. Every diagnosis of CFS is a misdiagnosis.

If you think you might have true ME, I recommend using the International Consensus Criteria to make that determination. It was developed and unanimously approved by many of the world’s top ME experts, and is the best tool I have found for separating true ME from other stuff. If you’d like to know more about what specific tests can be used to give a concrete diagnosis of ME, check out the page “ME tests.” If you’d like to read more about the difference between ME and CFS, as well as the politics which led to the current mess we are in, I highly recommend reading “The Misdiagnosis of CFS.” I’ll write more about what, specifically, ME is in a later post, but if you want to get a head start, I recommend visiting The Hummingbirds’ Foundation for ME, which is one of the very few websites with accurate information about this disease.

Thank you to A Rainbow at Night for bringing us up to date on Brooke’s condition in her final stages of the horrendous disease, M.E.

Global Health: Time to Pay Attention to Chronic Diseases

I subscribe to many government newsletters and blogs.  One is the NIH (National Institutes of Health) Director’s blog.  His name is Dr. Francis Collins.

Today, I read Dr. Collins’ post about a global initiative, Global Alliance for Chronic Diseases (GACD).  The headline,

Global Health: Time to Pay Attention to Chronic Diseases

really caught my eye.  Of course, my first thought was, “M.E. is a chronic disease, it is also a global chronic disease.”

The members of the GACD are:  the United States, United Kingdom, Canada, Australia, China, and India, South Africa, Brazil, and the European Union.  They are meeting in Shanghai as I write.

However, my good feelings quickly found themselves dashed as a pumpkin would feel if it fell off the farmers’ truck onto the paved road on the way to market.  I mean – smashed!

Dr. Collins went on to write:  “While infectious diseases remain a significant problem in the developing world, cancer, heart disease, obesity, diabetes, and other non-communicable diseases are now among the fastest growing causes of death and disability around the globe. In fact, nearly three-quarters of the 38 million people died of chronic diseases in 2012.”

My thought:  “And add the more than 20 million sufferers of M.E. to that, plus the uncounted number who suffer from fibromyalgia, POTS and others I can’t think of to name right now.  We’re talking about a big chunk of the world’s population.

I don’t know if Dr. Collins will take the time and trouble to answer my comment on his post.  Here is my comment:

“A very interesting post, Dr. Collins. I was not aware that the NIH helped form the initiative, Global Alliance for Chronic Diseases (GACD). Non-communicable diseases (NCDs) have not been targeted much, as far as I can see from all my reading, and am taking heart from this report, that there will be a much greater focus. You must be familiar with “M.E.” (myalgic encephalomyelitis). It is also called, “CFS” (chronic fatigue syndrome), which, according to all experts, clinicians, researchers, patients and advocates, is a great misnomer, as it certainly is much more than “fatigue.” Since M.E. is a NCD, as far as anyone knows, will the GACD have this disease on its agenda anytime soon? My daughter has M.E., so I have a personal interest. I send letters to President Obama every month, describing M.E., and how it affects the lives of more than 17 million people globally, with more than 1 million in the US alone. If this isn’t a catastrophe, I don’t know what is. BTW, if you could help us out within the NIH and HHS, we surely would appreciate some more focus and funds for research for M.E.  Thanks again.”

Economics and M.E/CFS 101

This is a very important article regarding the problems inherent in promoting M.E. as a disease which deserves more prominence in the government’s attention and medical scrutiny.

M.E. is also referred to as CFS (chronic fatigue syndrome) in this article.  Although there is great, deep, abnormal fatigue inherent in M.E., it is but only one of many symptoms.  So, in my opinion, M.E. should be inserted alongside CFS when reading this very informative article.  CFS is used only because it has become intertwined with M.E., in my opinion and many others’, by mistake.  We are trying to change the minds of people who have CFS embedded in their thinking.  CFS is not M.E.

kraftycatcreations

This article is an intelligent and enlightening look into the economics of ME/CFS.  I love what is expressed here and agree with Mr. Hadas. If only it weren’t so true.

Market failure can be sign of fatigue

By Edward Hadas
June 11, 2014
By Edward Hadas

The author is a Reuters Breakingviews columnist. The opinions expressed are his own. For a direct link to this article and all comments (not to be missed!) please go to: http://blogs.reuters.com/edward-hadas/2014/06/11/market-failure-can-be-sign-of-fatigue/

Modern economies work to meet consumers’ needs. So if needs are not met, that must be an economic failure, right? Healthcare suggests otherwise. Sometimes, unhelpful ideologies get in the way of economics delivering the goods.

Chronic fatigue syndrome (CFS) – also known as myalgic encephalopathy (ME) – is a case in point. The economic benefit of treating this difficult condition should be material for patients, drugmakers and society. Yet…

View original post 739 more words

M.E./CFS International Awareness Day Demonstrations Planned May 12th for SF and DC

May 12 International Awareness Day for ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is coming up fast! This year is the 30th anniversary of the famous outbreak of “chronic fatigue syndrome” at Incline Village, Nevada, which brought the disease into the mainstream.

Image

There are two demonstrations planned on May 12 at noon – one in San Francisco, and one in Washington, DC. See the link for more information and to RSVP to attend. http://www.meadvocacy.org/event_calendar

If you’re unable to attend, please share this message widely on email, message boards and social media, especially to healthy people.