A new head of ME/CFS Research work has been appointed at the NIH, National Institute of Health, Susan E. Maier. She will head this massive arm of government research in charge of finding out all about Chronic Fatigue Syndrome. Read more about Susan E Maier below and send out your greeting to her, too, if you so choose. This could be a good move for research and ME/CFS!

The National Institutes of Health (NIH) Office of Research on Women’s Health (ORWH) is responsible for coordinating the research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) across the NIH institutes, centers and offices. NIH supports research on the etiology, diagnosis and treatment of ME/CFS and engages in activities that sustain focus on this research area, since there is no known cure or preventative treatment.

I am pleased to announce that the ORWH has recently appointed Dr. Susan E. Maier as the Associate Director of Special Projects. Dr. Maier will serve as the NIH contact for ME/CFS activities and will replace Dr. Charles Wells as the Chair of the Trans-NIH ME/CFS Research Working Group. Dr. Maier has experience in brain development and teratology (the study of abnormalities of development), with an emphasis on the effects of alcohol on embryonic and fetal brain development, including sex differences. Dr. Maier can be reached at Susan.Maier@nih.gov or 301-435-1573.

I would also like to thank Dr. Wells for taking on these responsibilities on behalf of the ORWH and for his dedication to coordinating activities in support of the ME/CFS research over the past several months, following the retirement of Dr. Dennis Mangan.

Please join me in welcoming Dr. Maier!

Per, Janine Austin Clayton, MD
Acting Director, Office of Research on Women’s Health,
Office of the Director, National Institutes of Health

Thanks so much for dropping by the Health Matters Show. Find your ME/CFS research news here.

Cinda Crawford, your host

In the following argument against ME coming under the same classification as CFS (and therefore substantiating a person’s diagnosis of ME/CFS), the author makes some valid points, in my opinion.

What does that mean? How does it affect you if you have a diagnosis of Chronic Fatigue Syndrome? How does it affect other people with fatigue symptoms and related illnesses (i.e. Fibromyalgia)? Well, let’s see.

(9 minute 41 second podcast)

• The illness known as Chronic Fatigue Syndrome has always had a lousy name. That name implies a condition that hangs around long enough to become chronic, where fatigue is a hallmark symptom and is so poorly-defined and regarded as to not be considered a true disease state, but rather a syndrome only.
• The illness known as ME or Myalgic Encephalomyelitis is not well know in the US, but considered the primary name of the similar (if not the same) illness in the UK and throughout the world. It’s definition and symptoms fall within the neurological realm, obviously garnering much more respect in the medical world because of this tie-in. (Exception: within the UK, some psychological professionals choose to say ME is not a neurological illness but “all in the person’s head”. Go figure.)
• If we choose to combine the illnesses and names into ME/CFS, we will irrevocably intertwine the two now (somewhat) distinct illnesses. Surely the patient numbers will increase many fold, but what else will we gain? If we can prove they are the same, we have immediately expanded the scope of knowledge, research and people working on medical issues surrounding the medical problems.
• Having made that choice though, there may be some long term outcomes that are not so pleasant. Check out the following copied information from a note Jill McLaughlin submitted to Co-Cure and then my thoughts following hers.

ICD codes determine the diagnosis. We have recognized “It’s the name, stupid” and even “It’s the definition, stupid.” But perhaps it should be “It’s the diagnosis, stupid.” They all come into play, especially for advocacy.

The name sets the public awareness scene. The definition is most important for research purposes to define a reliable and representative patient cohort. The diagnosis is for the clinical setting.

More importantly, they all have to match and be used specifically and consistently with the same terminology and meanings. This
is where things have spun out of control and lost the plot as terms all used differently or to mean different things.

For practical purpose, the ICD code determines the diagnosis. ICD codes are beyond obscure codes used for billing purposes
or gathering statistics. With the overreach of electronic records, the code IS the diagnosis that is in your record and follows you.

The ICD codes are the diagnosis, but do NOT determine what that diagnosis actually is (which is what the disease definition does).

This is where the Coalition 4 ME/CFS (Pandora, Marly Silverman, Phoenix Rising, Cort Johnson, WI and a few other online or
support groups) proposal to change the ICD codes fails to do what they say they want or what claim it will; in fact it will
do the opposite.

Changing the code to neurological will not make a difference. It will still be a fatigue syndrome diagnosis of exclusion. CFS
does not define or describe a neurological illness so fudging the codes will not help. The code will not override the definition.

However, the information that the Coalition 4 ME/CFS are giving to the patient community seems to be misleading and deceptive.
They claim that their recommendations to NCHS will not affect ME and state that it is only to reclassify CFS as neurological. But
their actual recommendation to NCHS was to classify CFS to the same ICD code as ME at G93.3, which will combine them both under a single code (see info below).

To change the code for CFS to the same code as ME will only make them the same (diagnosis) and will be viewed as synonymous terms. Adding the term ME will still not change what it is. True ME will not exist. The ME-ICC will be for naught, and this proposal does the opposite of what the ICC calls for.

This clearly reflects their intention for ME=CFS=ME/CFS which they have promoted and advertised all along. Hint: this is what
Wessely does: it allows him to study fatigue and pretend to be studying ME. ME is not a fatigue syndrome. This proposal would deprive ME patients of their rightful diagnosis by keeping it officially as and connected to CFS.

ME is coded correctly as it has been for 40 years and should remain as is and not be changed or subdivided. CFS is coded
correctly as is to fit the current definition.

Those with ME should oppose the changes put forth by the Coalition 4 ME/CFS.

Contact:
NCHS review committee: nchsicd9CM@cdc.gov and Donna Pickett, RHIA, MPH, Medical Classification Administrator National Center for Health Statistics email: dfp4@cdc.gov

=============
The Coalition 4 ME/CFS proposal, summary, FAQ etc. say that it is only to reclassify CFS as neurological. NCHS report states that the Coalition 4 ME/CFS recommended that CFS be added as an inclusion term along with ME under code G93.3.

*The Coalition 4 ME/CFS has said that there were doctors or medical professionals involved or who supported this proposal. Yet the only basis of support I have actually seen them produce as evidence are CFSAC recommendations. But again, the only CFSAC recommendations I have seen are to change CFS to a neurological code, but not code it to ME *as they have actually done.

Per: Jill McLaughlin

~~~~~
Thank you so much for joining the Health Matters Show blog and podcast today. It’s a sticky wicket for sure to figure out a) what to call the two illnesses and b) whether it’s prudent to irrevocably join them together. It seems more prudent to me that we determine exactly what each illness is, its basis in the body (neurological, neuro-endocrine, or something else) and make sure we have a handle on each one before we make the move to simply combine them. Let’s not make a confusing situation worse in desperation. An argument against ME/CFS is not necessarily wrong at this moment in time.

Considering fatigue, pain and a host of other symptoms, this issue is of great importance to each individual/ suffering person. Here in the US, many people are diagnosed with CFS and then re-diagnosed later with Fibromyalgia. The exact opposite is true, too. Some believe they have Fibromyalgia, but the illness turns out to singly CFS or a combination of the two. Very few US doctors are capable of diagnosing an outright case of ME. These facts should make it obvious: our doctors are already confused with all this and to throw another huge issue into the pot could be catastrophic. Symptoms? Diagnosis? Name? Treatments? No one has all the answers.

Let’s make a point of getting this right!

Cinda Crawford, host of the Health Matters Show

*****Please leave an appropriate comment!*****

Along with the Health Matters Show podcast today on Chronic Fatigue Syndrome (CFS) and some personal references to the level of sickness I overcame, see the links and information below highlighting Dr. Richard van Konynenburg and his work. You simply must check out this incredible resource for have-to-have-it information and videos on ME/CFS.

Listen to my podcast. I hope my words of encouragement give you hope to keep on…keeping doing what you’ve got to do until healing is on the horizon for ME/CFS.

Next continue down the page for the link to the extensive videos featuring Dr. Richard van Konynenberg of Sweden. He talks about the similarities and differences between ME and CFS and so much more. He demonstrates why he and many of his colleagues believe that these two health problems are really one single illness, ME/CFS. And because “chronic fatigue syndrome” is such a vague term, how and why the illness called ME, Myalgic Encephalomyelitis may be a better, overall name.

And, before you leave, don’t forget the October 15, 2011 Wellness Seminar by Laura Gentile & her cohorts. I’ll be among the speakers that day!

(8 minutes 54 second podcast)

Now…for Dr. Richard van Konynenburg, his documents, presentations and more brought you in several revealing videos:

• Definition and history of Chronic Fatigue Syndrome and ME, Myalgic Encephalomyelitis <= Click the main link to get access to the videos.
• The ME International Consensus Criteria
• How ME/CFS relates to Fibromyalgia
• Onset characteristics
• Possibilities of epidemics or clusters
• Severity of the patient’s illness state
• The variety of symptoms that seem to affect to many organs and body systems
• The possibility of genetic predisposition
• Estimates of how many people worldwide are sick with this illness; prevalence
• Likely causes or stressors
• Body’s biochemical response
• The abnormal glutathione response (depletion) and molecules affected by it
• How this relates to findings in autism research and treatment
• The role of folates in the body
• The pathogenesis (disease development) of most cases of ME/CFS
• Diagram of energy metabolism and mitrochondrial dysfunction
• Post-exertional fatigue and why too much exercise can damage the individual
• HPA (Hypothalamus/ Pituitary/ Adrenal Axis) dysfunction
• Brain Problems, such as connection of brain and hypovolemic (low blood pressure) balance
• Evidence of white spot lesions on the brain as evidenced by MRI testing
• Defect in neurotransmitter synthesis and metabolism, plus blood flow to the brain
• And actual infections in the brain
• Altered immune response for the whole body
• Abnormal Digestive system
• Thyroid abnormalities (e.g. Hashimoto thryoiditis)
• Nerve abnormalities (*see remarks about electromagnetic radiation)
• Possible test: Methylation Pathways Panel (from Sweden and one branch in US)
• Recommended dosages of products he suggests

He also talks about a clinical study he and his colleagues did. The fact that such distinguished scientists and researchers want to get rid of the name we’ve shunned since it all began = Chronic Fatigue Syndrome = should give us encouragement to consider the better name, ME/CFS.

Thank you so much for joining the Health Matters Show podcast today!

Cinda Crawford, your host

Many folks can’t answer the question, What is ME?, but Margaret Williams can. In a recent post to Co-cure.org, she lists the following, hard-nosed rebuttal to Dr. Wessley Simon’s current thoughts and treatments (if you can call them that) on ME and she offers a very detailed list of ME symptoms, etc. Both issues may be of interest to you if you want to learn more about ME, how the illness is perceived and just how complicated it is. ME and CFS may be exactly the same illness (in you?) or they may be somewhat different.

(expose’ copy to follow)

Professor Wessely over a barrel?

Margaret Williams 24th September 2011

On 23rd September 2011 in its “News Focus”, the journal Science published a chronology of events surrounding the putative relationship of a retrovirus with ME/CFS (False Positive; www.sciencemag.org), in which psychiatrist Simon Wessely was quoted: “People will rather go over Niagara in a barrel than ever getting involved in CFS again”.

His statement is clearly contemptuous about everyone suffering from ME (known by him and his colleagues as “CFS”) and it seems designed to ensure that biomedical research into the disorder will not proceed. Such overt discouragement of urgently-needed research into ME is contrary to the basic tenet of medicine, which used to be: “First do no harm”.

Professor Wessely’s latest jibe illustrates exactly what should not occur when clinicians are dealing with sick and vulnerable people: “The most shameful behaviour is to engage in a contest of meanings with a patient, denigrating or ridiculing what one does not agree with” (Healing beyond the body – Medicine and the Infinite Reach of the Mind; Dr Larry Dossey; Piatkus Books, 2002).

Wessely certainly does not agree that biomedical research into ME is needed; he is well-known for his belief that ME/CFS is “somatisation par excellence” (J Psychosom Res 1994:38:2:89-98) and for his British Medical Journal podcast on 5th March 2010: “We’re not going to go doing more and more tests to find out what the virus was because, frankly, even if we found it there’s nothing we’re going to do about it. We’re in the business of rehabilitation.

It is not surprising that Professors Wessely, Peter White and Michael Sharpe, all of whom were involved with the PACE Trial, are held in deep disregard by those whose lives have been wrecked by ME/CFS and who – rightly – are both exasperated and infuriated at repeatedly reading the inane description of their disease as fatigue, with some cognitive impairment, and perhaps a bit of depression thrown in for good measure.

Each and every time that Wessely makes yet another denigratory attack on people with ME, there is a need for attention to be drawn to the reality of ME, which cannot be repeated too often. ME is not “fatigue”, accompanied by a few memory problems and depression, nor is it an aberrant illness belief that has resulted in reversible deconditioning, as the Wessely School maintain.

ME is a devastating multi-system inflammatory neuroimmune disorder, with extreme malaise; nausea; abdominal pain and diarrhoea; frequency of micturition with nocturia; post-exertional exhaustion almost to the point of collapse; inability to stand unsupported for more than a few moments, sometimes being too weak and painful to walk; inability to walk upstairs or to maintain sustained muscle strength, as in brushing one’s hair; inability to carry a shopping bag, or dry oneself after a bath, peel vegetables or prepare a meal, with recurrent mouth ulcers that make speaking and eating difficult.

ME is neuromuscular in-coordination, not only of fine finger movement with clumsiness and inability to control a pen and to write legibly, but also of the larynx and oesophagus – there is a need to swallow carefully to avoid choking, with oesophageal spasm and pain.

ME is constant danger of falling because of balance disturbance (ie. dysequilibrium or loss of balance); staggering gait (ataxia); dizziness on moving, with episodic incapacitating vertigo; difficulty with voice production, especially if speaking is sustained; expressive dysphasia (inability to find the right word); muscle cramps, spasms and twitching and spasmodic trembling of arms, legs and hands.

ME is frequent episodes of angor animi (brought about by abrupt vasomotor changes, when the heart stops beating then crashes furiously, causing difficulty breathing and uncontrollable shaking, and feeling that death is imminent); there may be an urgent need for oxygen.

ME is photophobia; difficulty in focusing and in visual accommodation, with rapid changes in visual acuity; blurred and double vision; sometimes actual loss of vision; eye pain; swollen and painful eyelids, with inability to keep the eyelids open.

ME is tinnitus and hyperacusis, for example the noise of a lawnmower can cause acute distress and nausea; heightened sensory perception (eg. acute sensitivity to being patted on the back; inability to tolerate lights, echoes, smells, movement, noise and confusion such as found in a shopping mall or supermarket without being reduced to near-collapse).

ME is peripheral neuropathy; numbness in the face; parasthesias; altered sleep patterns, with hypersomnia and insomnia.

ME is severe dysautonomia, including alternate sweats and shivers; temperature dysregulation, with intolerance of heat and cold; tightness of the chest alternating with a moist chest; breathing problems — shortness of breath on minimal exertion; the need to sleep upright because of weakness of the intercostal muscles; pronounced cardiac arrhythmias; lack of bladder and bowel control; orthostatic tachycardia; orthostatic hypotension, with extremely labile blood pressure that is not amenable to therapeutic drugs.

ME is intermittent palindromic nerve pains; muscle tenderness and myalgia, sometimes burning or vice-like; typically shoulder and pelvic girdle pain, with neck pain and sometimes an inability to hold the head up.

ME is hypovolaemia, with blood pooling in the legs and feeling faint due to insufficient blood supply to the brain; there may be swollen feet and ankles.

ME is intermittent crushing chest pain akin to a myocardial infarct; segmental chest wall pain; subcostal pain; vasculitic spasms, including headaches; cold and discoloured extremities, with secondary Raynaud’s Disease; easy bruising; peri-articular bleeds, especially in the fingers; leaking blood vessels; cutaneous vasculitis with rashes; flushing of the face (sometime just on one side); flushing and swelling of fingers and hands, with vasculitis of feet and (in females) the breasts.

ME is pancreatic exocrine dysfunction leading to malabsorption; reduced liver function and demonstrable adrenal insufficiency.

How Wessely could possibly justify encouraging scientists not to engage with such a devastating disorder is incomprehensible, yet he has been taunting and ridiculing patients with ME for years, denying their illness (Susanna Agardy; Co-Cure EDU: 25th August 2011).

The first tenet of medical research used to be that it was necessary to have as homogeneous a cohort as possible, this being another tenet that seems to have vanished – witness the moving of goal posts by the Wessely School.

For example, contrary to accepted scientific practice, the PACE Trial Investigators deliberately chose broad entry criteria which included people with psychogenic fatigue, idiopathic fatigue and fibromyalgia – quite different disorders – claiming that they were all manifestations of medically unexplained fatigue, despite the fact that the trial purported to be studying those with the discrete disorder “CFS/ME”.

Deliberately to broaden entry criteria for a clinical trial to include patients who do not have the disorder allegedly being studied contravenes elementary rules of scientific procedure.

As noted by others: “Mixing in people who do not have a disease with patients who do confounds the results and conclusions of any study regardless of the disease or disorder being studied” (Kelly Latta; Co-Cure RES; 15th September 2011).

However, having claimed for many years that ME, CFS, irritable bowel syndrome, fibromyalgia, hyperventilation syndrome, “atypical” chest pain, tension headache, pre-menstrual syndrome, globus hystericus and multiple chemical sensitivity are all one single functional somatic syndrome, those same PACE Investigators are now on record saying something rather different.

A recent article by BBC News health reporter James Gallagher says: “There is emerging consensus that CFS/ME is not one illness”; Professor Peter White is on record in the article stating: “Most specialist doctors (there are no specialist NHS doctors in the UK apart from psychiatrists) and scientists agree that it is more than one illness. It may be three to five separate illnesses”, whilst his co-Principal Investigator, Michael Sharpe, is now saying: “The concepts of CFS and ME have been conflated as CFS/ME. That may
be right but it may be a bit like an apple/banana – we need to be what we are talking about” (http://www.bbc.co.uk/news/health-14883651).

That is precisely what biomedical scientists and patients with ME have been saying for decades. The PACE and FINE Trials have shown that “the business of rehabilitation” is unsuccessful. Is it not time for the Wessely School to leave the field entirely and encourage new approaches based on hard science rather than psycho-speculation?

Permission to repost (from Margaret Williams). You always have permission to repost and share anything from the Health Matters Show. Please do and don’t forget to leave a comment. After all, what is ME to you in your life?

I’ve often wondered if ME/CFS (Myalgic Encephalomyelitis / Chronic Fatigue Syndrome) would be better classed as a neurological disease. Now many experts are thinking along that line. Here’s why. Even though there may be bacterial and virological triggers to this horrible, life-altering illness, certain experts within scientific circles are in agreement that CFS should be reclassified as a neurological disease in the ICD-9-CM and ICD-10-CM in recognition of the current scientific understanding of CFS and its classification in the ICD-10 by the World Health Organization (WHO).

Below you’ll find the latest information on the proposal submitted to the CFS Advisory Committee (CFSAC), an advisory committee, created under the Federal Advisory Committee (FACA) statue and regulations. Feel free to leave a comment or any new information you have.

Thanks so much, Cinda Crawford

[Submitted to Co-Cure.org by Mike Munoz ]

Please see below announcement from the Coalition for ME/CFS. We will be presenting the ICD proposal, today (Wednesday) in Baltimore, Maryland, September 14, 2011.

Coalition for ME/CFS, ICD Announcement, September 12, 2011
FOR IMMEDIATE RELEASE*
Contact: Corin Ramos, Walson Communications
Cell Phone: 714-865-4147
Email: corin@walsonpr.com

*Coral Gables, FL, September 12, 2011* – The Coalition 4 ME/CFS on July 15, 2011, submitted a proposal to the National Center for Health Statistics (NCHS) for reclassification of chronic fatigue syndrome (CFS) as a neurological disease in the United States… .

For: International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM). The proposal was accepted for review at the upcoming meeting of the Coordination and Maintenance Committee at the Center for Medicare Services (CMS), in Baltimore, Maryland, on September 14, 2011.

The proposal request is supported by past and current recommendations from the CFS Advisory Committee (CFSAC), an advisory committee, created under the Federal Advisory Committee (FACA) statue and regulations. The proposal request is to reclassify CFS as a neurological disease in the ICD-9-CM and ICD-10-CM in recognition of the current scientific understanding of CFS and its classification in the ICD-10 by the World Health Organization (WHO).

“The goal of this proposal is to ensure alignment with ICD-10 under WHO and the clinical modifications embraced by other countries, and to ensure alignment with the best current case definition for CFS, which includes both viral and bacterial triggers,” stated Mike Munoz, a member of the Coalition 4 ME/CFS steering committee.

The WHO publishes the ICD, which is used by more than 100 countries to
standardize how diseases are classified. In the ICD-10, which is the current global standard, myalgic encephalomyelitis (ME), post viral fatigue syndrome (PVFS), and CFS are all classified under Neurological Diseases. “This proposal is a stepwise change that will separate cases of ME/CFS from cases of unspecified chronic fatigue and depression, and in the process, signal to the medical community the seriousness of this disease,” said Lori Chapo-Kroger, another steering committee member.

It is estimated by the Centers for Disease Control and Prevention (CDC) that at least one million individuals in the U.S. and 17 million worldwide (National Institutes of Health) are stricken with this debilitating, disabling, and sometimes fatal disease. The annual economic cost in the U.S. for ME/CFS according to a recent study published in the Journal of Dynamic Medicine-Bio Med Central, by Jason et al., from DePaul University is estimated to be between 18 and 23 billion dollars. Marly Silverman, another member of the current Coalition 4 ME/CFS steering committee added: “The approval for review of this historical proposal by the NCHS, highlights the fact that current science is bringing government health agencies, researchers and patient advocacy groups together to collaborate, leading to results that will improve quality of life for patients afflicted with ME/CFS in the U.S.”

The Coalition 4 ME/CFS supports our scientific research community in the efforts of retiring the name chronic fatigue syndrome and the acronym CFS. It supports a worldwide collaborative and accepted case definition, with well-defined diagnostic criteria and guidelines for implementation of well-devised treatment standards. Although the coalition recognizes pragmatically the effort and time needed to drive this welcome change across all clinical, research, legal, disability, and insurance disciplines in the U.S., we believe our ICD-10-CM and ICD-9-CM proposal initiative contributes to a productive timely result.

We acknowledge and express gratitude to Mary Dimmock, who prepared the proposal request with solid expertise and diligence on behalf of the Coalition 4 ME/CFS. We thank the Coalition 4 ME/CFS steering committee for their unwavering commitment to this project. We acknowledge CFSAC members who have voted for the recommendations that this proposal supports. We appreciate the support of physicians and researchers who provided expert input to the proposal.

To read the proposal and get more information, visit the coalition website.

*About NeuroEndocrineImmune Diseases (NEIDs)*NeuroEndocrineImmune diseases include fibromyalgia (FM), chronic Lyme disease (CLD), multiple chemical sensitivities (MCS), Gulf War illnesses (GWI), and chronic fatigue syndrome (CFS). CFS is also known in Europe and other countries as myalgic encephalomyelitis (ME).

*About Coalition four ME/CFS was founded on March 1, 2011. The mission of the coalition is to engage and mobilize governmental health agencies, the private biomedical industry, researchers, health care providers, and the public toward finding a cure for ME/CFS and related NeuroEndocrineImmune diseases.

Coalition members are the Chronic Fatigue Syndrome/Fibromyalgia Organization of Georgia, Inc., CFS Knowledge Center, CFS Solutions of West Michigan, PANDORA, Inc. (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.), Phoenix Rising, Rocky Mountain CFS/ME & FM Association (RMCFA), Vermont CFIDS Association, Inc., and Wisconsin ME/CFS Association, Inc.
~~~~~

*Visit the coalition on Facebook.
*Visit Cinda Crawford on Facebook.
*Visit Cinda’s new page for chronic illnesses on Facebook and “like” it today!

*Follow the coalition on Twitter.
*Follow Cinda Crawford on Twitter.

Stay informed. Come back to the Health Matters Show blog and podcast often. “Could ME/CFS be a Neurological Disease?” is just one topic of many!

The words feeling down and being sad often mean more for a sick person than the lines of a familiar song.

Feeling down can describe your mental outlook or, maybe even, your general state of health. Feelings of being sad can linger for more than an hour, a day or a week. How are you coping?

If you suffer with Fibromyalgia (FMS) or Chronic Fatigue Syndrome (CFS or ME/CFS), you may find that you go through some pretty rough times because you feel terrible and -stark truth- you may not be getting well -or- your health may not be improving. You actually may need more interaction with your caregiver- more often and on a deeper, more personal level than you normally experience together. It’s common to find solace in talking to friends, however, please don’t indulge in a lengthy pity party. Remember: your goal is to find your way out of depression or depressed mood, not wallow in its misery too long, or worse yet, indefinitely.

With much of the world getting ready for a season change, know that the fall months can sometimes trigger a change in your symptoms, too, or aggravate feelings of depression. Instead of giving into that process, I urge you to listen to today’s Health Matters Show. We’re talking about this topic and some tips for dealing with this important health issue, including how to make the best use of a caregiver or friend.

The podcast today is 7 minutes 46 seconds. Play it here or feel free to download. Then continue down the page for the rest of this post.

Should you naturally assume that you’re depressed? Please don’t. Having actual clinical depression may or may not be a diagnosis for you. It depends on many things. In the meantime, study and learn more about “depression”. If you still feel blue, contact a medical or psychiatric professional to help you handle this potentially serious health problem.

*Note: there are lots of people who would love to hear your thoughts, so feel free to write a comment below. Share how you beat mild or strong depression, how depressive symptoms are affecting your life and about your ongoing struggles with this challenging part of long-term illness => DEPRESSION. Comment if you struggle with feeling down, being sad or you want to speak out about depression. **Feel free to use a fictitious name if you like, but keep your story real. Reach out and share your struggles and your successes. If your story is meaningful, it may help other people who are struggling.

Then “share” this post on Facebook, Twitter, Digg or wherever you hang out online. Thanks so much and have a happy, healthy day!
Cinda Crawford, host of the Health Matters Show

I offer you the post below that is an excellent review by Kevin Short, in which he discusses recent clarifications and expert findings that cause him to believe the following: “Use of the terms Chronic Fatigue Syndrome/CFS, Fatigue Syndrome/FS, Fatigue, CFS/ME, Myalgic Encephalopathy and the like in reference to Myalgic Encephalomyelitis patients is clearly unjustified, harmful and needs to cease.”

*Kevin Short’s statement is bold, but he backs it up with lots of data. Facts about ME before may have been confusing to you. What do you believe? Are these all the same illness? Today you have a chance to revisit this issue and possibly change your opinion because you now have more good, concise information.

The new ‘Myalgic Encephalomyelitis: International Consensus Criteria’[1] by Dr Bruce Carruthers et al was published online in the Journal of Internal Medicine in July 2011 — doi: 10.1111/j.1365-2796.2011.02428.x.

This landmark document is an outstanding evidence-based patient diagnosis and research subject selection guideline that warrants widespread application. It was produced by an erudite international expert panel that between them have seen many thousands of ME patients in 13 countries and have engaged with both long-established and cutting-edge evidence from clinical practice and research settings. The document is designed for adult and paediatric clinical and research use and it is to be followed up with further supportive resources from the consensus panel as specified.

Set against a context of unhelpful, opaque and profound international medico-political controversy on disease terminology and related matters, the new international consensus document brings much needed clarity; stating:

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International
Classification of Diseases (ICD G93.3). [2]

The new international consensus document then goes on to cite evidence in the scientific literature underpinning myalgic encephalomyelitis terminology and its ICD classification and sets out problems with various broad-ranging patient selection criteria that give misplaced emphasis to ‘fatigue’:

The problem with broadly inclusive criteria is that they do not select homogeneous sets of patients. The Centers for Disease Control prevalence estimates increased tenfold from 0.24% using the Fukuda criteria to 2.54% using the Reeves empirical criteria. Jason et al suggest there are flaws in Reeves’ methodology because it is possible to meet the empirical criteria for ME without having any physical symptoms and it does not discriminate ME/CFS patients from those with Major Depressive Disorder. Patient sets that include people who do not have the disease lead to biased research findings, inappropriate treatments, and waste scarce research funds.[3]

Using ‘fatigue’ as a name of a disease gives it exclusive emphasis and has been the most confusing and misused criterion. No other fatiguing disease has ‘chronic fatigue’ attached to its name — e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue — except ME/CFS.[4]

The current revision/edition of the WHO International Classification of Diseases that most countries subscribe to, including the UK, is the tenth one (ICD-10). A few countries use their own ‘clinical modification’ version of the WHO ICD. The standard/unmodified WHO ICD-10 primary tabular list uses the term ‘Postviral Fatigue Syndrome/PVFS’ as the primary disease label with ‘Benign Myalgic Encephalomyelitis/ME’ as its synonym. PVFS/ME is classified in ICD-10 under ‘Diseases of the Nervous System’ at section G93.3 (Other disorders of brain) and nowhere else. In doing so the WHO implicitly recognises the history of viral involvement in the disease and specifically excludes the disease from mental and behavioural disorders such as ‘Fatigue Syndrome’ – which is classified separately and exclusively in ICD-10 under ‘Mental and behavioural disorders’ at section F.48.0 (Other neurotic disorders). The WHO have confirmed on many occasions that such disease classification is always exclusive and that listed disease entities are not classified under more than one rubric and are not interchangeable.

Taxonomical confusion has arisen in this field for three main reasons. Firstly, certain psychiatrists have made and published widespread claims
that are factually incorrect and at odds with the WHO (see below). Secondly, because a few countries, including the USA, use their own unique “clinical modification” version of the WHO ICD which is different from the world standard. Thirdly, because the WHO did not put all of the details of their ICD 10th Revision in their online website summary. For accuracy on ICD-10 classification therefore, full reference needs to be made to the three-volume published/book version[5].

The term ‘Chronic Fatigue Syndrome/CFS’ (not to be confused with ICD-10-F.48.0 ‘Fatigue Syndrome/FS’) is in fact not entered/categorised anywhere in the ICD-10 tabular list whatsoever and is not therefore an ICD-10 disease classification/term in its own right. It is merely listed in the ICD-10 alphabetical index as a term by which PVFS/ME (ICD-10-G93.3) may be referred to but crucially, in clarifying this point to members of the UK ME community, the WHO unequivocally stated:

ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. The index (i.e. volume iii) cannot be taken as definitive.” [Dr Robert Jacob, Medical Officer (ICD),
Classifications, Terminologies and Standards, WHO HQ, Geneva. 4th February 2009].

Prior to this clarification there was understandable use of the compromise term ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome’ or ‘ME/CFS’[6] (as opposed to ‘CFS/ME’ – see below) by many ME activists given that so many genuine ME patients have unfortunately been labelled and studied as CFS patients. Now that the WHO and the new Myalgic Encephalomyelitis International Consensus Criteria have added clarity to matters, use of the compromise ME/CFS terminology is no longer justified in my view: It is far better to simply stick to ICD-10 recognised ‘Myalgic Encephalomyelitis’ terminology in our literature and relegate to a caveat or footnote the fact that many genuine ME patients and research subjects have been labelled as CFS. Surely the best way for ME activists to assist fellow patients that are inappropriately labelled with CFS is to refuse to adopt the latter terminology any longer and insist that patients are examined, diagnosed and included in biomedical research studies on the scientifically justifiable basis set out in the new Carruthers et al international consensus criteria?

Alongside the problem of various “fatigue” labels diverging from WHO-IDC-10 Myalgic Encephalomyelits taxonomy, in the UK, we have the added problem of the use of Myalgic Encephalopathy by Dr Charles Shepherd and his associated charity. This wholly unclassified label was subsequently taken up by The National Institute for Health and Clinical Excellence (NICE) in production of its psychosocial ‘CFS/ME’ clinical guideline 53. The “encephalopathy” terminology is very broad-ranging and, given that most medical dictionaries state something along the lines of “the hallmark of encephalopathy is an altered mental state”[7]is wide open to psychosocial misattribution in my view. Moreover, to reiterate the views of the expert international consensus panel, the encephalomyelitis terminology is evidence-based and entirely justified:

In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’(ME) because it indicates an underlying pathophysiology.[8]

With regard to the encephalopathy matter therefore, Dr Bruce Carruthers, lead author of the international consensus criteria, earlier cautioned:

The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since -opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion.[9]

Even if the reason for the ‘-opathy’ name change at the UK ME Association was well-meaning it is clear that Dr Carruthers’ concerns on motives behind terminology change are broadly justified. Consider for example the case of Professor Simon Wessely who, in spite of the tenth edition of the International Classification of Diseases and a large body of biomedical evidence claimed “that ME is simply a belief, the belief that one has an illness called ME”[10]. Wessely then went on to misrepresent Myalgic Encephalomyelitis in a various professional for a as mental illness and misrepresent WHO ICD-10 taxonomy as merely patients’ own “lay label”. He did this, by his own admission, in order to pursue a “constructive labelling” “strategy” of having physical ME gradually subsumed into the rubric of mental disorders – by “gradually expanding understanding of the condition to incorporate the psychological and social dimensions.” Thus, in The British Medical Journal Professor Wessely tellingly stated:

“One challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome. It may seem that adopting the lay label endorses the implicit causal theory and reinforces the perceived disability. For better or worse, the medical profession has lost the monopoly on naming conditions, and rejecting lay terms can needlessly alienate patients. A compromise strategy is “constructive labelling,” expanding on the lay name. It would mean treating chronic fatigue syndrome as a legitimate illness, acknowledging that it may have a viral trigger (as many patients report), while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the chief medical officer’s report of the term chronic fatigue syndrome/myalgic encephalitis reflects such a compromise, albeit an uneasy one.”[11]

Myalgic Encephalomyelitis is WHO ICD-10 disease classification, not the “lay label” that Professor Wessely misleadingly claims. ME is rightly classified in ICD-10 as neurological/physical disease and accompanied by a large body of biomedical evidence. ME is not “simply a belief” as Wessely disgracefully asserts. Caveat Emptor therefore: the psychiatrists’ “constructive [re]labelling” “strategy” gradually moves ‘PVFS/ME’ to ‘ME/CFS’ to ‘CFS/ME’ to ‘CFS’ to ‘FS’ to ‘F’ etc in disregard of a growing body of biomedical evidence and all in aid of “gradually expanding understanding of the condition to incorporate the psychological and social dimensions.” In my view such a questionable shift is aided by changing to an ‘encephalopathy’ label “the hallmark of [which] is an altered mental state.”

Returning to the new International Consensus Criteria, not only do the authors cite evidence against use of ‘fatigue’ terminology and in support of encephalomyelitis pathology, in their concluding remarks, Carruthers et al state: “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome.”[12]

I could not agree more, but if the ME community want state agencies to properly use ICD-10 Myalgic Encephalomyelitis disease taxonomy then we need to consistently lead by example.

Kevin Short, July 2011.

contact@angliameaction.org.uk

This text is available online as a PDF document .

Permission to repost]

ENDNOTES:
[1] Myalgic Encephalomyelitis: International Consensus Criteria. Journal of Internal Medicine, 20 July 2011
[2] Ibid.
[3] Ibid.
[4] Ibid.
[5] For accuracy in ascertaining WHO ICD-10 disease classification, full reference needs to be made to the three-volume published/book version. The bibliographic details of all three volumes are:

- International Statistical Classification of Diseases and Related Health Problems -Tenth Revision — Second Edition: Volume 1 — Tabular List — ISBN: 92 4 154649 2.

- International Statistical Classification of Diseases and Related Health Problems -Tenth Revision — Second Edition: Volume 2 — Instruction Manual — ISBN: 92 4 154653 0.

- International Statistical Classification of Diseases and Related Health Problems -Tenth Revision — Second Edition: Volume 3 — Alphabetical Index — ISBN: 92 4 154654 9.

[6] See, for example, ME/CFS: TERMINOLOGY by Margaret Williams. And ME/CFS: Classification Issues by Margaret Williams

[7] “The hallmark of encephalopathy is an altered mental state.”

[8] Carruthers et al op. Cit

[9] Dr Bruce Carruthers, in personal correspondence with Kevin Short in 2005 with a view to his comments being made public. Viewable on-line at: www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm

[10] In “Microbes, Mental Illness, The Media and ME: The Construction of Disease”; Simon Wessely; 12th May 1994; 9th Eliot Slater Memorial
Lecture, Institute of Psychiatry, London. A copy of Professor Wessely’s own 12th May 1994; 9th Eliot Slater Memorial Lecture notes, along with
comment, is available here: http://www.meactionuk.org.uk/wessely_speech_120594.htm, http://www.meactionuk.org.uk/wessely_speech_120594.pdf

Cited in ‘Submission re: DSM-V and ME/CFS‘, Compiled by Professor Malcolm Hooper and Margaret Williams for submission by The 25% ME Group, 20 March 2010: http://www.meactionuk.org.uk/DSM-V-submission.

[11] Managing patients with inexplicable health problems. Baruch Fischhoff, Simon Wessely. BMJ Volume 326, 15 March 2003. BMJ
2003;326:595–7.]

[12] Carruthers et al op. Cit.

Do we need clinical trials now for ME/CFS? We don’t have any that I know of and I’m wondering why not. Could it be that the status quo (e.g. do little to nothing) is adequate? No. That’s can’t be. ME/CFS stands for Myalgic Encephalomyelitis, a brain illness. How can we not investigate something as ominous as an illness like that which affects 1 million people in the US and 17 million people worldwide?

Probably because it’s tied to the very trivial sounding, CFS or Chronic Fatigue Syndrome. Such a silly and non-specific name. Isn’t everyone tired? Of course. We live in a universe of overly stressed and tired people. Take a look at the video below, which was produced this year in San Francisco, California. Then share how this illness affects your life and what you personally think needs to be done. And finally, share the links to this post so that we can encourage and promote clinical trials now for ME/CFS. It’s time!

Cinda Crawford, host of the Health Matters Show

What is the 2011 Winning-est PSA video produced by Lynn Bousquet that creates awareness for ME/CFS, a debilitating and sometimes fatal NeuroEndocrineImmune disease (NEIDs)? It’s right here! Please leave a comment here below the video or to go to YouTube. Awareness for ME/CFS and Fibro are so important and the big day is coming up May 11th…very soon! Video always has been and always will be a great way to communicate.

Also, be sure to return here at the Health Matters Show on Friday to hear Dr. Charles Lapp, a Chronic Fatigue Syndrome and Fibromyalgia specialist from Charlotte, NC. It will be good…I promise you!

Thanks so much, Cinda Crawford
Host of the Health Matters Show

Passing along this announcement about the Tenth International ME/CFS Clinical & Research Conference. It would be great to go, attend and hear everything being said. Why not go?

OTTAWA, ONTARIO–(Marketwire – March 15, 2011) -

The International Association for CFS/ME and The National ME/FM Action Network (Canada) are pleased
to announce the 10th International ME/CFS clinical & research conference in Ottawa, Canada.

The professional conference themes focus on fatigue, pain, sleep, pediatrics, cognition and brain function in ME/CFS, Fibromyalgia and Related illnesses and will be addressed in scientific sessions on assessment and treatment and original research in the fields of immunology, virology and neuroendocrinology.There will also be workshops for clinicians and researchers.

Conference details:

DATE: September 22nd to 25th, 2011
CITY: Ottawa, ON Canada
LOCATION: The Delta City Centre Hotel (613) 237-3600
(formerly Crowne Plaza hotel) 101 Lyon Street, North, Ottawa, ON K1R 5T9 CANADA

To view the Conference details and backgrounder, please download the following PDF:

http://media3.marketwire.com/docs/315mefm.pdf

Registration will open in May, 2011. A call for abstracts is now posted on the homepages of
http://www.iacfsme.org and http://www.mefmaction.net

ONE-DAY CONFERENCE FOR PATIENTS & advocates interested in these illnesses IS SCHEDULED FOR SEPTEMBER 22ND, 2011.

IT IS ANTICPATED THAT THIS EVENT WILL BE ACCREDITED FOR CONTINUING MEDICAL EDUCATION: CATEGORY 1 CME FOR PHYSICIAN, CNE FOR NURSES, AND CPE FOR PHARMACISTS.

For more information, please contact National ME/FM Action Network, Lydia Neilson, 613-829-6667
mefmaction@ncf.ca

——–
(c) 2011 MarketWire

If you’re interested in this announcement about the Tenth International ME/CFS Clinical & Research Conference or you think your doctor might be, act on this information today.

Thanks, Cinda Crawford
Host of the Health Matters Show

XMRV, Xenotrophic Murine Leukemia Virus, has been uncovered in prostate cancer for men, is implicated in ME/CFS and now the question is being asked: Can XMRV transmission occur between individuals or not? That question has not been answered 100% yet, but aren’t other viruses transmissable? Can’t you catch other illnesses through either casual, blood-borne or sexual contact? Yes, of course.

Recently, Heidi Bauer left a comment on this blog about a previous post I did. Topic: Whether XMRV was transmissable or not. Unfortunately the underlying Internet source article at the Bellingham Herald has been removed, so to aid in this ongoing discussion, I encourage you to check out the additional research material on this topic listed at the bottom of this post.

Commenter’s opinion on my previous post: …I think the typical assumptions are wrong regarding XMRV transmission and sex. Many claim that since they do not see CFS type disease spreading rapidly through the gay community or prostitutes that this is good enough reason to suspend belief in XMRV as transmissible through sexual contact. I find this wrong for two reasons. First, it is very clear that RVs can infect without causing immediate disease. HTLV can take many years to cause cancer and neuro problems. X+ cancer patients (lymphomas/prostate) could have carried the virus for years before it created disease. Men whose wives have had CFS for decades are asymptomatic until they develop prostate cancer. So, there is certainly a lag time for some X-related diseases. Secondly, viral load has much to do with transmission for the other two RVs. It may take repeated exposure to an infected person (such as a spouse or long term partner) before transmission can occur. As other patients, I also believe repeated exposure at work or in the home through casual contact is possible depending on viral load.

Until a reliable assay can be mass produced (which they are working on frantically they say), we will not know the extent of XMRV transmission. It is quite clear that being infected does not promote disease, or at least not right away.

My answer:

Heidi, so sorry the Bellingham Herald moved or removed their article. That happens sometimes (although I try to keep everything available here at the Health Matters Show all the time. But I am reading & hearing your comment with great interest. Since the collective ‘we’ don’t really know what is going on with XMRV, it is too preliminary to say whether there is transmission going on definitively or not… but, like you, I suspect there are factors being transmitted that are affecting people’s health. ‘We’ should realize there is more we don’t know than what we do!

That is certainly an argument ‘for’ ME/CFS’s existence and necessity to learn more about it AND to continue ongoing investigations into it, no matter where the trail may lead. Government powers may not like the answers to these questions because 1) they will end up with egg on their collective face(s), 2) they will have to figure out what to do about the blood supply, 3) they will have to come up with preventative measures for transmission and 4) they will have to figure out how to combat the illnesses (whatever they are). Now many of us who have been so sick expect their to be a dramatic connection to ME/CFS. Time will tell…if we can keep them going down the right road and being open & honest in the process. Being an ostrich won’t get us anywhere except blinking back the sand. Best wishes, Cinda (And thanks again for commenting!)

Here are more reference websites speaking to this topic. I urge you to check them out quickly. The links are good now, but of course, could be made unavailable at any time.

Links:
1) Whittemore Peterson, Q & A,
2) Phoenix Rising: XMRV ME/CFS Transmission,
3) Xenotransmission: XMRV

And then, of course, Best XMRV CFS links will discuss XMRV transmission, plus a whole lot more.

Thanks so much. Be sure to leave your comment, too!
Cinda Crawford, host of the Health Matters Show

This is a good news bad news post on the XMRV and ME/CFS situation. Yes, research is continuing both in the United States and abroad. Most of the overseas work is being conducted in the UK, but other projects are going on, too. Here are some of the very latest reports. I suggest you read and research them carefully. In the world of research right now, what affects ME (Myalgic Encephalomyelitis) affects CFS (Chronic Fatigue Syndrome), too!

The WPI, Whittemore Peterson Institute, and their illustrious scientists and researchers continue to investigate the possibility of XMRV having a causal relationship with ME/CFS. However, many other researchers around the world are actively disputing that possibility. They are screaming that WPI’s research was contaminated! Could it be so?

One way or the other, we need to know the truth. This scientific bickering may be part of the “proof” process, but it also unnerving and causing a lot of people to lose hope in “science” ever finding a cure. Hopefully, 2011 will be the year when all truth is revealed. We, the people, have waited long enough.

See below to read the most current XMRV and ME/CFS update and latest reports from Retrovirology:

Cinda Crawford, host of the Health Matters Show

1) 12/21/10, National Health Service, “Chronic fatigue syndrome ‘not virus’”

2) 12/21/10, Nature, New challenge to link between virus and chronic fatigue syndrome

3) 12/21/10, XMRV update: comment from Professor Tony Pinching by tonybritton

4) Letter from a vocal ME-CFS Advocate. It’s worth your time, plus the link he provides at the bottom is very comprehensive:

Dear All,

Dr Charles Shepherd is posting on the internet (LocalME UK at Yahoo Groups 22 December 2010) notice of the fact that Professor Pinching just happened to provide an “XMRV Update…” article (see below) for the Myalgic EncephalOPATHY Association on the day that five decidedly dodgy “XMRV is all just lab contamination” papers/articles appeared courtesy of Retrovirology (followed the day after by further outstanding examples of grossly imbalanced British Journalism on the matter at the BBC, Guardian and elsewhere).

Professor Pinching concludes in his MEA article: “The current view of informed observers is that the research evidence does not support the idea that XMRV or other retroviruses have a role in the causation or
manifestations of CFS/ME.”

What utter rubbish! “informed observers”! If you want to know what genuinely informed observers really think then go to:

http://cfspatientadvocate.blogspot.com/2010/12/mouse-that-roared.html

http://www.facebook.com/notes/xmrv-global-action/xmrv-global-actions-response-to-the-cbc-news-coverage-of-retrovirology-on-xmrv/486793716796

http://www.wpinstitute.org/index.html

http://merutt.wordpress.com/2010/12/20/uttalelse-fra-prof-kenny-de-meirleir-om-de-5-kontaminerings-studiene-fra-uk/

Call me a cynic but such Pinching/MEOpathy coverage seems more than a tad imbalanced to me and out of place for an organisation that’s supposed to be advocating for sound science and proper treatment for ME patients. Where is the editorial comment from Dr Shepherd and his MEOpathy Association giving a more balanced view of matters and pointing out the blatant inaccuracies in Pinching’s article? Pinching’s article and the MEOpathy website it is on is not only failing to do right by ME patients it is misleading both them and the public. With ‘friends’ like that who needs enemies?

Here’s a personal opinion for free. I think that UK Myalgic EnephaloMYELITIS patients would be much, MUCH better off giving their money to the charities ‘Invest in ME’ and ‘ME Research UK’ than to the decidedly failed and lukewarm so-called advocacy outfit that is the Myalgic EncephalOPATHY Association.

Do yourself a favour and read the section on British ME charities in ‘Corporate Collusion’ at:
http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
Enough is enough.

Kev Short
contact@angliameaction.org.uk

[Permission to repost].

Margaret Williams recently made the following information about Inflammation and symptoms of ME/CFS public.

Note: although most of the following information is included in Magical Medicine: how to make a disease disappear, it is presented here as a short article for ease of access.

Some illustrations of published evidence of inflammation in ME/CFS patients include the following:

1955

In this outbreak of ME in Adelaide, Australia, an agent was repeatedly transmitted to monkeys; when the monkeys were killed, microscopically, infiltration of nerve roots with lymphocytes and mononuclear cells was seen and some of the nerve fibres showed patchy damage in the myelin sheaths and axon swellings consistent with neurological involvement. In these monkeys, there were widespread changes involving the dorsal root ganglia, cervical and lumbar nerve roots and peripheral nerves. Perivascular collars of
lymphocytes and plasma cells were in the cerebral cortex, brainstem and cerebellum, spinal cord and around blood vessels to nerve roots (Pellew RAA, Miles JAR; Med J Aust:1955:2:13:480-482, cited by J Gordon Parish; Postgraduate Medical Journal 1978:54:711-717).

This is particularly significant, given the autopsy evidence presented at the Royal Society of Medicine meeting in the series “Medicine and me” on 11th July 2009 by Dr Abhijit Chaudhuri, where he showed slides of
inflammation of the dorsal root ganglia in three ME/CFS patients.

1970

Innes reported isolation of Coxsackie B2 virus from the cerebrospinal fluid: “The isolation of an enterovirus from the cerebrospinal fluid in the fourth month is in itself remarkable” (Innes SGB; Lancet:1970:969-971).

1992

“Neurologic symptoms, MRI findings, and lymphocyte phenotyping studies suggest that the patients may have been experiencing a chronic, immunologically mediated inflammatory process of the central nervous system” (Buchwald, Cheney, Peterson D, Komaroff, Gallo et al; Ann Int Med: 1992:116:103-113).

1994

“As with any chronic inflammatory condition affecting the central nervous system, the T2-bright foci on MRI in (ME)CFS may represent a perivascular cellular infiltrate and/or reactive demyelination of the surrounding white matter. Alternatively, these abnormalities may reflect the results of a vasculopathy specifically involving the small vessels of the cerebral white matter. Specifically, on the basis of our observations, the white matter abnormalities seen on MRI images may represent foci of gliosis or chronic demyelination, which appear to be irreversible” (Schwartz RE et al; Am J Roentgenology:1994:162:935-941).

1997

“It is now evident that this illness is not simply an imaginary one, nor the result of anxiously amplifying normal bodily sensations. Substantial objective evidence of abnormalities in the central nervous system is now available. Magnetic resonance imaging has revealed punctate areas of high signal in the white matter more often in patients with (ME)CFS than in healthy controls. They may represent areas of inflammation or demyelination” (Komaroff AL. JAMA:1997:278:14:1179-1184).

2004

“These findings are consistent with an activated inflammatory response. Shockingly, the mean QOL (quality of life) scores as regards limitations on physical functioning were very, very low, similar to those found in people with AIDS and multiple sclerosis” (Advances in biomedical understanding of ME. Neil Abbot. Vance Spence. InterAction May 2004).

2006

“(ME)CFS is a poorly defined medical condition which involves inflammatory and immune activation. The Type I interferon antiviral pathway has been repeatedly shown to be activated in the most afflicted patients. An abnormal truncated form of ribonuclease L (37-kDa RNase L) is also found in (ME)CFS patients and this protein has been proposed as a biological marker for (ME)CFS. The levels of this abnormal protein have been significantly correlated to the extent of inflammatory symptoms displayed by (ME)CFS patients. (Our) results suggest that chronic inflammation due to excess nitric oxide plays a role in (ME)CFS and that the normal resolution of the inflammatory process is impaired” (M Fremont, K De Meirleir et al. JCFS 2006:13(4):17-28).

2007

“A number of symptoms of CFS are linked to inflammatory processes….CFS has been found to be associated with increased immune activation and inflammatory cytokine levels….Our expanded understanding of the genomics of (ME)CFS has reinforced the evidence that the illness is rooted in a biologic pathogenesis that involves cellular dysfunction and interactions between the physiologic stress response and inflammation” (Nancy G Klimas and Anne O’Brien Koneru; Curr Rheumatol Rep 2007:9:6:482-487).

2008

In a personal communication, Nancy Klimas, Professor of Medicine at the University of Miami, world-renowned immunologist and expert on ME/CFS, said that 80% of all ME/CFS patients (both severely and not so severely ill) do have evidence of inflammation if the correct scans are employed, and she believes that 100% of ME/CFS patients actually have inflammation.

2008

On 17th December 2008 Emory University School of Medicine issued a press release by Kathi Baker: “A new study conducted by researchers from Emory University and the Centres for Disease Control and Prevention (CDC) shows that individuals with (ME)CFS have increased blood levels of the inflammatory chemicals known to increase risk for developing illnesses ranging from cardiovascular disease and dementia to diabetes and cancer. ‘We don’t know where the increased inflammation is coming from in patients with (ME)CFS symptoms in our study, and although depression has been associated with increased inflammation, in our study it did not account for the increased inflammation in individuals with (ME)CFS’ (explained Dr Charles L Raison). The researchers found that subjects with (ME)CFS had higher levels of CRP (c-reactive protein) than did well individuals and also had higher scores on an inflammatory factor that included both CRP and white blood cell
levels”.

2009

In the study to which the above press release relates, the authors stated: “The current study examined plasma concentrations of high-sensitivity c-reactive protein (hs-CRP), white blood cell count (WBC) and a combined inflammation factor in a large (457) population-based sample. Log-transformed mean plasma concentrations of hs-CRP were increased in subjects with (ME)CFS when compared to subjects who were well” (Charles L Raison et al; Brain, Behaviour and Immunity 2009:23:3:327-337).

2009

Professor M Maes from Belgium reviewed recent findings on inflammatory and oxidative and nitrosative stress pathways and reported: “The ‘psychosomatic’ symptoms experienced by (ME/CFS patients are caused by intracellular inflammation. Symptoms occurring in (ME)CFS have a genuine organic cause, that is activation of peripheral and central IO and NS pathways and gut-derived inflammation” (Curr Opin Psychiatry 2009:22(1):75-83).

2009

Professors Mary Ann Fletcher and Nancy Klimas published yet more confirmatory evidence of immune dysfunction and inflammation in the maintenance of ME/CFS: “In this study, 10 of 16 cytokines examined showed good to fair promise as biomarkers. However, the cytokine changes observed are likely to be more indicative of immune activation and inflammation…Many of the symptoms are inflammatory in nature….

“Pro-inflammatory cytokines: A significant elevation in the relative amounts of 4 of 5 pro-inflammatory cytokines in peripheral blood plasma of patients with (ME)CFS was found when compared with the controls. In cases, lymphotoxin (LT)? was elevated by 257% and IL-6 by 100% over the controls.

“Anti-inflammatory cytokines: IL-3 was significantly lower in (ME)CFS patients.

“The probability of chronic inflammation in (ME)CFS patients is supported by the elevation of four members of the pro-inflammatory cytokine cascade, LT?, IL-1?, IL-1? and IL-6, in the (ME)CFS samples compared to controls.

“Interleukin-13, associated with inhibitory effects on inflammatory cytokine production, was lower in cases compared to controls.

“The results from this study support a TH2 shift, pro-inflammatory cytokine up-regulation and down-regulation of important mediators of cytotoxic cell function”. (Journal of Translational Medicine 2009:7:96:doi:10.1186/1479-5876-7-96)

2009

In her lecture in November 2009 at the University of Miami, Professor Nancy Klimas said about viruses and ME/CFS that much of the research at Miami and internationally found that the viruses studied all have several things in common: they infect cells of the immune system and the neurological system; they are capable of causing latent infections and they can reactivate under certain conditions.

She also said that their early work at Miami in the late 1980s (published in the Journal of Clinical Microbiology in 1989) showed that ME/CFS patients had immune activation and poor anti-viral cell function. She then went on to discuss the importance of the findings of the retrovirus XMRV (evidence of which was published in Science on 8th October 2009), saying that it was “very impressive work”. She continued: “This Science paper was amazing for a number of reasons. First, this team had put together such strong science that they could go for a Science paper. Science is like the Mecca of publication. If you get your stuff in Science, that’s the best place you could possibly (get it published). And they don’t take just anything and they sure, sure, sure don’t take anything unless it’s extremely well done, validated and tested out. So they took this paper – they not only took it, they put it in Science Express. They thought it was so important, they published on a very fast track…The way (the researchers at the Whittemore Peterson Institute) looked is very sophisticated…They then tried to find (the virus) in all these other ways…they looked from a whole different angle. Still found it. Backed up and looked from another angle. Still found it…they had five different kinds of ways they looked for this virus. And they were able to find the virus. That’s why Science was so impressed…It is a virus that can infect tissues that aren’t white blood cells…We’ve always thought something like that has to go on in (ME)CFS because you all have some neuro-inflammation. Your brain has a low grade level of inflammation.

And you have some inflammation in the tissues that make hormones, particularly in the hypothalamic-pituitary-axis. And this is a virus that infects that type of tissue…It’s pretty impressive that out of 101 (ME)CFS cases defined by clinical case definition or a research case definition that they found 99 with the virus…And, oh, by the way, we have a biomarker. Not a small deal. A biomarker – the virus itself. No betterbiomarker than something that’s clearly, tightly associated with an illness…So the conclusion, it really is a big thing. It’s a big thing…That work we were already doing plays right into this. All the genomics work and all the immunology work. This is all critical to the better understanding of this illness and how this virus plays into it” (with grateful acknowledgement to PANDORA and http://aboutmecfs.org/Rsrch/XMRVKlimas.aspx and http://aboutmecfs.org/Rsrch/XMRVKlimasII.aspx).

2010

On 19th September 2010 in a radio interview (South Florida Spotlite, interviewed by Ron St John), world expert in ME/CFS Professor Nancy Klimas (principal investigator of the National Institute for Health’s Centre for Multidisciplinary Studies of (ME)CFS Pathophysiology at the University of Miami) was clear: “…there is a chronic inflammation, neuro-inflammation, and it upsets the whole balance of your systems…the patients become terribly ill…. The immune system is really cranked up; it’s a tremendous amount of inflammation. I think that if doctors could get this in their heads that it’s sort of like lupus or one of these really inflammatory disorders…it is that level of inflammation. There’s a tremendous amount of inflammatory stuff going on, and there’s a lot of inflammation in the brain itself” (http://www.litemiami.com/spotlite/index.aspx)

Note on inflammation

Following an international meeting on inflammation held in Bordeaux, France, Robert Dantzer et al published a Review entitled “Identification and treatment of symptoms associated with inflammation in medically ill patients” (Psychoneuroendocrinology 2008:33:18-29). Given the documented evidence of inflammation in ME/CFS, this Review has important implications for people with the disorder. It recommends testing with a standard battery of inflammatory markers in medically ill patients. Quotations that might be relevant for people with ME/CFS include the following:

“This meeting brought together clinicians and basic scientists with a common interest in understanding inflammation and associated symptoms in medically ill patients (and it) focused on: (a) predominant symptoms associated with inflammation, (b) markers of inflammation at the periphery, (c) possible markers of brain inflammation associated with low-grade peripheral inflammation in humans, (d) animal models of inflammation-associated symptoms, and (e) domains of intervention for controlling inflammation-associated symptoms”.

“The diagnostic tools that are favoured by psychiatrists are clearly not the best ones. As pointed out by Joel Dimsdale (San Diego, CA), the concept of somatisation that is used for characterising symptoms in the absence of any detectable disease is of little operational value, if not misleading”.

Margaret Williams says that this information may be reposted. She also notes, “It may be instructive to consider how the information…has been so consistently ignored by the Wessely School during the 25 years of Professor Peter White’s celebrated ‘Fatigue Service’ and what impact – if any –this information will have on the PACE Trial results and on the Principal Investigators’ consequent recommendations for cognitive restructuring interventions.”

Thanks, Cinda Crawford
Host of the Health Matters Show

PS- I hope that my re-posting this helps you verify your illness and the many symptoms (including inflammation) of ME/CFS that you’re living with everyday. It is real… not made up. If you need some documentation to prove it, print out this blog post in it’s entirety. Use, forward, tweet and post at will! I’d love it if you left comments here. Thanks again

To understand the beginnings of CFS and ME/CFS, we have to go back and look at when the term CFS (for Chronic Fatigue Syndrome) first came into being in the late 1980′s. It was an insufficient name for a complicated illness even back then. For years people around the world have tried to come up with something better.

In 2007, The CFS Name Change Advisory Board was formed to do just that. See the members of this committee seated around the table in the picture above. They remain as some of the most prominent physician/ researchers in the world on the topic of Chronic Fatigue Syndrome: (left to right): Drs. Anthony Komaroff, David Bell, Nancy Klimas, Leonard Jason, Charles Lapp, Lucinda Bateman, Paul Cheney and Daniel Peterson. (Pictured separately below.)

From an article in ProHealth, “The CFS Name Change Advisory Board (NCAB) has amended its initial proposal and now recommends that the name for ‘chronic fatigue syndrome’ be changed to the acronym ME/CFS.”

The board realized that the use of ‘CFS’ logically would continue for awhile and it has. Sticking with the term CFS (particularly in the US) prevents harming patients involved in disability and medical insurance issues, and it provides a continuity of sorts in the research arena. However…

The Board encourages the change because the trivializing nature of the name ‘chronic fatigue syndrome’ negatively affects diagnosis, patient care, and research funding.

Okay… to be honest, I wrote this post awhile back. I never published it. I was looking at it today and thought, why not? The name change issue is still viable. The illnesses are viable. And to my knowledge, not a single thing involving this issue has been resolved. That is tragic.

If my interpretation of this issue is no longer true (and that’s possible), please let me know. I’ll gladly add to this information and re-post it. The worldwide population of people suffering with CFS and ME/CFS needs to get things resolved. Eventually… surely… we will be.

Cinda Crawford
Host of the Health Matters Show

Today on the Health Matters Show, we’re going past Wednesday’s article on Arthritis Today: Five Steps to Pain Relief and on to exploring Cognitive Behavior Therapy (CBT), as espoused by the Arthritis Today website. (*Be sure to catch the tips on controlling chronic pain and the explanation of how this subject is linked to Fibromyalgia and Chronic Fatigue Syndrome and check out the link to Arthritis Today on the previous post.) But first, let’s explore cognitive behavior therapy in the brain fogged world of Chronic Fatigue Syndrome and Fibromyalgia.

Specifically is the reference article’s Step 5: Calm the body to calm the mind. The authors suggest that you consider Cognitive Behavior Therapy (CBT). I’m not sure how prevalent this type of psycho-therapy is to be effective for Arthritis, but the suggestion has certainly been around for Fibromyalgia, Chronic Fatigue Syndrome (CFS), and especially, ME/CFS.

ME stands for Myalgic Encephalomyelitis and is a condition that is somewhat similar to CFS in the United Kingdom (UK). For some people, it can be totally debilitating and devastating, much worse than the average case of CFS. However, in particular instances CFS can be horrible, too. You simply don’t hear as much about anyone affected that badly in the US, but they are there.

In general, ME/CFS is the term and abbreviation used for the ailment worldwide because ME and CFS are somewhat similar in nature.]

(Audio is 8 minutes and 12 seconds)

Arthritis Today’s explanation goes like this…

If you’ve ever received unexpected bad news, your body probably reacted with a strange sensation in your gut. Although the pang isn’t pleasant, it provides more proof that what your body feels is connected to what your mind thinks. Psychotherapists using CBT help people understand that connection and learn to control their thoughts so they can control feelings and physical reactions.

The very mention of the term “CBT” evokes regurgitative-quality revulsion in some circles of the world, especially in the ME/CFS community. No person can be so in control of their thoughts and emotions 100% of the time and therefore have the ability to control what is going on in their body, especially when they have such a complicated condition as this. From a practical basis, the UK medical establishment’s applied definition of CBT and how they implement it is hogwash because they belittle the person in a zealous attempt to control the illness process. IT DOESN’T WORK!

Even so, with all of that bad opinion and caveat already said, I encourage you to consider the premise from another point of view today and with a different goal in mind. Why should you do this? 1) Because this is truly important. 2) Because your mind, body, spirit connection is so very powerful as a human being and 3) Because you want to heal and get your life back. Know that there are valuable points here about cognitive behavior therapy to take home.

If and when the UK chooses to expand its CBT treatment regimen to include a true and complete mind, body and spirit approach -and- real medical healthcare until renewed health is achieved, people will benefit greatly. Possibly millions of people’s lives around the world would be improved from a more compassionate, comprehensive and expanded focus, as well as a truly medically-based approach. Every side of this equation is necessary if people are to get well en masse. As of now, very few people are being helped in the UK at all!

Each person, sick or well, deserves to be treated with dignity and respect. I wonder… when is “man” ever going to learn that subverting someone else’s wishes beneath his own does not work? Love and compassion can be the worldwide phenomenon that we are all seeking as brothers and sisters interested in the health and welfare of each other.

Let’s find a way to do this and make this concept our “new” health reality. This type of attitude about health benefits us all. By adopting this approach, we change hearts, minds and ultimately how the “world” thinks and acts. Ultimately, that leads us all toward a universal evolution of wellness and true health.

Thank you for visiting the Health Matters Show, for listening to my negative view on cognitive behavior therapy (CBT), as it’s being practiced now in the UK and for my more positive slant on what “could be” if we choose to embrace the good side of healing our minds, our bodies and our spirits.

Cinda Crawford, your host

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