Tag Archives: medical community

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..

 

Mr. President, Can This Bode Well for M.E.?

NIH names new clinical sites in Undiagnosed Diseases Network

As reported in a recent blog, I subscribe to many newsletters and blogs from different departments in our government.  As a result, I get backlogged with the many emails in my inbox.  Today, I opened an email from the National Institutes of Health, dated July 1st.  Right away, my brain started to buzz with the action of neurons [from Wikipedia:   an electrically excitable cell that processes and transmits information through electrical and chemical signals].  Could this lead to some “buzzable” action that will mean NIH support for M.E.?  It may be farfetched, but my mind grabbed this thought and ran with it.

Another letter to President Obama:

Dear Mr. President;

The National Institutes of Health has awarded grants to six medical centers around the country to select from the most difficult-to-solve medical cases and together develop effective approaches to diagnose them. The clinical sites will conduct clinical evaluation and scientific investigation in cases that involve patients with prolonged undiagnosed conditions.

The network includes and is modeled after an NIH pilot program that has enrolled people with intractable medical conditions from nearly every state, the District of Columbia and seven foreign countries. The network builds on a program at the NIH Clinical Center in Bethesda, Md. that, for the past six years, has evaluated hundreds of patients and provided many diagnoses, often using genomic approaches, for rare conditions.

M.E. (myalgic encephalomyelitis), commonly referred to as CFS (chronic fatigue syndrome), is an officially-undiagnosed (mystery) illness for which there is no diagnostic criteria in the U.S. and has remained a mystery for over 3 decades. I strongly believe that it should be considered to be included by the NIH network.

Undiagnosed, or mystery, diseases are conditions that even skilled physicians cannot diagnose despite extensive clinical investigation. Our medical community knows very little about M.E.:  these symptoms are not part of the curriculum in medical schools; and most have never had patients displaying (presenting) the symptoms of the multi-faceted illness; in fact, many patients suffering from these many symptoms are referred to psychiatrists for evaluations. This is because the primary physicians are totally baffled by the patients’ symptoms, and since the patients “don’t look sick,” they wash their hands of them and “hand” them off to another specialty.

Mr. President, this is serious. Globally, there are at least 20 million sufferers and more than 1 million in the U.S. The people who are so sick have not many corners to look in for relief. As a matter of fact, most suffer from unbearable pain and need pain-reducing medication. These patients are having trouble getting the dosage they require because of a new policy preventing the filling of prescriptions for a dosage that is higher than the usual. These patients are not the “usual” patient. They are being denied the relief they require. They are not addicts and they have no intention of selling it.

Sincerely,

Carol Carlson

 

Terminology and Meanings in ME

This blog post on WellMe||Wellington Region ME/CFS Support Group Inc examines and explains the different facets of M.E. in easy-to-understand terms for those suffering from this debilitating chronic disease as well as those healthy individuals and the medical community who have questions. It is the most enlightening article I’ve seen to date on this topic.

WellME || Wellington Region ME/CFS Support Network

Terminology and Meanings in ME

Terminology used in the [ability] scales [but which is very useful to anyone new to ME or to anyone trying to *explain* ME to others]

Resting: Resting means completely different things at different severity levels of illness. For the mildly ill, resting may be watching TV or sitting in a chair while reading a book or having a quiet visit with friends. For the severely ill, these activities are not at all restful and indeed would provoke severe relapses.

For the very severely ill, resting means lying down in a dark room in silence and with no sensory input at all (TV, radio or light) with zero physical movement or cognitive activity. Clothing must also be comfortable and the room must have a very moderate temperature; not too hot or too cold. When referring to resting, a better term for the very…

View original post 1,229 more words

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…

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How the U. S. Government is Abusing M.E. Patient Rights

Anyone who has been following blogs and tweets that highlight the plight of M.E. (myalgic encephalomyelitis) sufferers will know how desperate this fight is.

Myalgic Encephalomyelitis Awareness Blue Ribbon

Myalgic Encephalomyelitis Awareness Blue Ribbon

The US government through the Health and Human Services Department (HHS) and NIH (National Institute of Health) is doing all it can to push down and stop the fight for proper recognition of M.E. as a neurological, not a psychological, chronic illness.

Please watch this video courtesy of Jeannette Burmeister, to view experts, patients, and advocates addressing the IOM (Institute of Medicine) at its first public hearing (it isn’t a long video, but brings out the important highlights).  The IOM has been charged, by the HHS, and with the approval of the NIH, to come up with a diagnosis criteria.  (BTW, it has been suggested that the IOM might even change the name of the disease to “Chronic Multi-symptom Illness,” like they did with the Gulf War Syndrome – what a fiasco for the veterans that was!)

The HHS contracted secretly with the IOM at a cost of taxpayers’ money of $1 million, to convene a panel of experts and non-experts of this disease (non-experts outweigh experts on this panel), to “work” on the criteria.  This is being terribly mishandled by our government, in the face of medical experts, patients, researchers, and advocates, who say “adopt the CCC” (Canadian Consensus Criteria).  Money is the underlying reason why M.E. sufferers are faring so poorly in more ways than one.  Insurance companies don’t want to pay for all the expensive tests that are required to establish diagnoses.

The CCC has been accepted by many countries around the world as their criteria for diagnosing M.E., and it would give verification and acceptance for the more than 1 million M.E. patients in the U.S. (the same number as HIV/AIDS patients) who are suffering with this debilitating disease.

Please do what you can to forward the advocacy for these patients who, for the most part, have lost their lives (literally) and those who have seen their former rich, qualitative, productive lives taken away by this debilitating illness.

And, what is the ray of sunshine in all of this?  We have hope.  Without hope, all is lost.

 

sunshine

Images taken from bing dot com