I’m been burning the candle at both ends lately (proverbially, of course) and my immune system is talking trash to me, thus the title of today’s post: CFS and Germs. Now I don’t have full-blown CFS (Chronic Fatigue Syndrome) anymore. I don’t even have symptoms unless I’m living too close to stress and gotta-get-it-done-now style of life. Even so, today I’m suffering with a runny nose, sneezing and sometimes a stopped-up nose. Go figure. I’m even betting my voice sounds scratchy on the podcast today. But I’m hoping not too much so because I’m treating myself to extra sleep, I’m doing Intentional Resting for my immune system and taking care of myself.

It’s never easy to hold yourself back when there’s so much in front of you to do. That seems to be my life right now with a book in progress and…in the coming weeks, I’m preparing two fantastic interviews for you. I know how much both men can offer us on these topics of feeling tough, not having enough energy, not being as healthy as we want to be and wanting to do something mighty about the whole situation!

*Take a look at more CFS and germs info from quite a few years ago from Andrew W. Saul. None of us can afford to sit on our hands.

Andrew W. Saul drsaul@doctoryourself.com:
FOR SOME REASON, this item caught my attention. It was sent to me by Shirley Bentley, president of the US chapter of the Common Cause Medical Research Foundation.

“Germs Patented by U.S. Government Linked to AIDS, Chronic Fatigue Syndrome/Gulf War Syndrome, MS, Cancers and Immune and Neurodegenerative Diseases.

“West Nile Fever Virus (NYC Encephalitis Outbreak) sent to Iraq FROM U.S. Center for Disease Control 5/21/85 (page 275, Congressional Record, May 25, 1994: “Dual Use Exports to Iraq and their Impact on the Health of Persian Gulf War Veterans”) The CDC West Nile Web Site is http://www.cdc.gov/ncidod/dvbid ”

I must confess I found this all a tad hard to accept, at least until I saw that there are actual U.S. Government patents for some nasty little
germs. You can check for yourself:

U.S. Patent 5,604,093: Human Herpes virus-6 (HHV-6) Isolution and Products (Chronic Fatigue Syndrome; Health and Human Services) February 18, 1997 U.S. Patent 5,189,022: underlying viral cause of CFS (Health and Human Services) U.S. Patent 5,242,820: Pathogenic Mycoplasma (Mycoplasma
fermentans in CFS; Department of Defense) September 7, 1993 U.S. Patent 5,827,750: JHK Virus in CFIDS (Grossberg retrovirus) National Institutes of Health Grant RO1-AI-32710. …

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I urge you to stay tuned and support the Health Matters Show, if you can. I depend on you to bolster me in times like this. Your care, concern and support will be returned triple fold. Together, CFS and germs will be more than just a title, but a goal to conquer and overcome.

Thanks, Cinda Crawford
Host of the Health Matters Show

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

Wylie Vale Jr., a professor at the Salk Institute for Biological Studies in La Jolla, CA, led the team that discovered the brain hormone that we now call the stress response hormone. At age 70, he is now dead, but research continues surrounding this important work.

“Dr. Vale discovered CRF (corticotrophin releasing factor) in 1981 and the next year found a second hormone, called the growth hormone releasing factor, or GRF (growth hormone releasing factor), which had also eluded the older scientists,” per Nicholas Wade of the NY Times.

Kissing cousin to CRF is CRH, corticotrophin releasing hormone. “Two hormonal abnormalities—a CRH deficiency and the resultant cortisol deficiency would each contribute to the overall symptoms and course of CFS.” You may search Google for additional information and work with the term I used, “crh hormone + CFS”. Be sure to surround the term with quote marks. *Note: it’s possible to have too little circulating cortisol, too much or an imbalance of this important hormone. Any abnormality can cause unpleasant, hard-to-balance symptoms.

The research team found that on average, levels of cortisol, a hormone produced by the adrenal gland, were lower in the blood or urine of the 30 CFS patients studied than in the 72 normal volunteers tested. The body secretes cortisol in response to stress. Physicians have long known that even a subtle deficiency of cortisol can be associated with lethargy and fatigue.

(Today’s audio is 8 minutes 28 seconds.)

We’ve addressed CRH deficiency and how it may contribute to symptoms of CFS. Now let’s look at GRF (growth hormone factor). Why? Because there has been quite a bit of research done on Growth Hormone and it’s connection to Fibromyalgia. Two leading researchers from Oregon State Health and Science University, Dr. Robert Bennett and his wife, Sharon Clark, are two proponents of this important connection. I met them over ten years ago when I invited them to speak at a Fibromyalgia conference in Roanoke, Virginia. With a little digging, you can find lots of related research projects on this important connection.

Any way you slice the work of Wylie Vale, Jr., he was on to something big. We appreciate his contributions to science and to our world. When “our” hormones are out of balance for whatever reason, we (human beings) don’t feel well and our overall health can be compromised. Plus, staying chronically ill can make it tough to keep the stress response hormone equation balanced.

Cinda Crawford, host of the Health Matters Show

As most of you know, I consider myself recovered from CFS. Thank goodness! It’s a tough, cruel illness. CFS can be one of the toughest task-masters ever. Recently I came across the words of Jody Smith HERwriter and her account and testimony of her recovery from CFS. It’s real, tough but not impossible. Find out how to get on with your life like Jody and I did.

Listen. Learn. Comment. Consider the possibility: to RECOVER FROM CFS IS POSSIBLE. If you don’t give up hope, one day you can share your testimony with the world, too!

(Today’s podcast is 7 minutes 15 seconds.)

Here are some of Jody Smith’s words:

…others say that since there is no such thing as recovery from Chronic Fatigue Syndrome, that I must never have had it in the first place. I have read such things written about me, by people who don’t know me, who have never met me.

It was a shock the first time but I don’t take it personally now. And though I think it’s too bad that they wasted their time writing about someone they don’t know, on a subject they know nothing about — meaning, me — I can kind of get where they were coming from.

I am now in an interesting spot. I’m just not as sick as I was. I am able to have a life.

I still have my times of contending with CFS symptoms but they are so much less than they used to be. I’d compare it to someone with diabetes who mostly is fine, as long as they monitor themselves, and build in a few protections for themselves.

When I was very ill I couldn’t write at all. I could hardly write my own name. Having to do anything with pen and paper — or computer — would exhaust me mentally and physically in under five minutes. (skipped text)

But things have changed dramatically since I was a vegetable.

Please take time to visit her entire post at EmpowerHER and keep your own hope alive.

Before you leave the Health Matters Show, take another moment to check out my Learn How to Heal Yourself membership course. (*If you feel like you’re too sick to go through a course (and many people are), contact me directly for “healing services“. I’m happy to help you personally. Together, we can begin your healing and do it either in person or at a distance. Both methods work equally as well for most people!

Cinda Crawford, recovered from CFS for six years (after a 15 year illness)
Host of the Health Matters Show
Creator of Learn How to Heal Yourself membership course -AND-
Creator of Sacred Cellular Healing, a mind/body/spirit healing technique that helps people regain a healthy life after chronic illness.

The debate rages as to whether ME is the same as CFS and vice-versa and, especially, should they be more correctly termed ME/CFS? How are we mere mortals to know?

Tom Hennessey recently digressed at length to Co-cure forum. Read his expose’ and see if you can come up with a valid opinion, then tell us “why?”. We all would like the final word on this, once and for all. The question is, “Will we get it?” and when.

Thanks Tom Hennessy.
Cinda Crawford, host of the Health Matters Show

PS- the deadline is passed for voicing your opinion to Donna Pickett at NCHS, but it’s never too late to learn about this vital topic that affects us all.

Hey Boys and Girls, Ladies and Germs,

FWIW (for what it’s worth), here goes the Ego part. For better or worse, I am one of the smartest people I have ever met. so, all of you who hate me because I am a smart ass, can sign off or hit the delete button now. Also, I have sent my old Videos from CNN’s Larry king Live (twice) and the MacNeil/Lehrer News Hour, and numerous other cable TV shows and CBS’s 48 Hours, and NBC’s Dateline, and ABC’s 20/20, and forty or fifty hours more of TV shows on VHS, has now been transferred to Digital media and sent to at least 50 people in more than 20 countries who are ready to go the Internet, in case I accidentally get Hit by train, or have my brakes fail, or some other seeming “accident” in the next few months, I will predict here and now, that it won’t be an accident.

OK, Now for the meat in this sandwich. Personality wise, she is tough to deal with, but i think Jill McLaughlin is MUCH closer to the facts than the so-called “ME/CFS” coalition. I have told her repeatedly, that i agree with her almost completely on the facts, but that she rubs soooo MANY people the wrong way (including my late father), that her message gets lost in the delivery.

After reading more than 30,000 emails, letters, faxes, FB messages and personal meetings with people from all over the world, IMNAHO (In my NOT always Humble opinion) These are NOT one disease, nor do they have ONE trigger.

I believe that these are cases of Multiple CHRONIC IMMUNOLOGICAL AND NEUROLOGICAL DISEASES aka CIND. that is where the name RESCIND, INC. comes from, some 20 years ago.

The Coalition 4 ME/CFS submitted a proposal to NCHS to reclassify Chronic Fatigue Syndrome (CFS) as neurological and code it to Myalgic Encephalomyelitis (ME) at G93.3. [Coalition 4 ME/CFS ICD-10-CM & ICD-9 revisions for Chronic Fatigue Syndrome (CFS)

http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]

The premise that the Coalition 4 ME/CFS has used is that ME is the same as CFS and thus the ME=CFS=ME/CFS model. They are not the same. The definitions are different. ME is not a fatigue syndrome. Some symptoms may overlap, as with many illness (and considering that CFS is so broad), but they are different in nature and outcome.

The Coalition states that “there are over 4000 scientific papers on ME/CFS” [page 2, http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]).

This is not true, with regard to ME/CFS (as the Canadian Criteria) or just the generalized use (or misuse) of the term. A medline search for ME/CFS listed 46, not 4000. Is this yet another haphazard, general unofficial substitution of the term ME/CFS?

The rationale upon which they base their request to change the ICD codes for CFS can be broken down as follows:

1. The Coalition 4 ME/CFS states that the purpose for the changes to the ICD codes is to bring the codes in line with the definition [http://coalition4mecfs.org/ICDPR.html]. This proposal does not accomplish this intention. NCHS has coded them properly. The current US ICD codes are already in line with the definitions. NCHS has coded ME and CFS accurately in the ICD-9 CM and the intent for the ICD-10-CM. CFS does not strictly define a neurological illness. Codes should accurately reflect and match the definition and classification. CFS is by definition a symptom syndrome and coding is accurate at R53.82 (under general signs symptoms).

The Coalition 4 ME/CFS states: “… the goal is to ensure alignment with the best case definition for CFS, which includes both viral and bacterial triggers.” [http://coalition4mecfs.org/ICDPR.html]

No CFS definitions include viral and bacterial triggers. The Coalition 4 ME/CFS does not designate what the “best case definition” is as there are several, which may be different. NCHS is part of the CDC. This NCHS Committee is to properly code existing illnesses. It should adhere to US/HHS policies. This would require staying within the confines of the current recognized and accepted HHS/CDC definitions. Codes do not define illnesses nor change case definitions.

If the Coalition wanted to specify a “best case definition,” they should have done so and THEN push for its acceptance and THEN code it accordingly. If this is what they were getting at, they skipped a critical step in the process.

2. The Coalition 4 ME/CFS states that the purpose of the proposal to NCHS is to code CFS as neurological. “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 International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM).” http://coalition4mecfs.org/ICDPR.html

None of the CFS definitions define what would be recognized as identifying a neurological disease. A recent survey of members of a Neurological Association demonstrated that84% do not view CFS as a neurological illness. (“Chronic Fatigue Syndrome: Labels meanings and consequences,” Journal of Psychosomatic Research, 9 April, 2011) The abstract notes that *”this is at odds with the WHO classification.” They do not view it as neurological because the definition does not support it as neurological DESPITE the WHO classification. Codes will not override the definition.

3. WHO ICD 10 and other countries have adopted the coding of CFS to ME at G93.3. There are many CFS definitions and other countries can make their own decisions and code them accordingly. Likewise the US should base it on the convention of our own policies, not based on other countries. The purpose of the Clinical Modification is to allow for such convention and changes or modifications can be determined according to each countries standards and policies.

NCHS has given the following explanation: “While it appears most appropriate to classify chronic fatigue syndrome in ICD-10-CM in the same way that it is classified in ICD-10, this placement is not without problems. The primary concern with the current WHO
placement in ICD-10 has been that the abnormalities of the brain in chronic fatigue syndrome patients most often cited in the literature are not found in all chronic fatigue syndrome patients. While chronic fatigue syndrome may be a heterogeneous group of disorders, some but not all are neurological in nature. Likewise, not all patients have experienced a viral infection prior to being diagnosed with chronic fatigue syndrome, nor are immune system anomalies universally found. Also of potential concern is the similarity between the type of neurological findings in chronic fatigue syndrome and in depression, which is a psychiatric disorder.” [A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, [http://www.co-cure.org/ICD_code.pdf]

This statement by NCHS is accurate and this is why the US should not make the changes requested by the Coalition 4 NCHD as it is not in line with with the definitions used by the US federal health agencies.

The Coalition 4 ME/CFS claims that adopting the WHO convention of coding CFS to ME together at G93.3 would improve the diagnosis and patient care (see # 2). Actually in countries that have made these changes there has been no improvement in research, diagnosis, recognition or the general CFS worldview.

4. The Coalition 4 ME/CFS claims that research findings support their request. [http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pf page 5]

A section in the proposal is entitled neurological pathology. It states “Pain, debilitating fatigue and *especially post exertional malaise are hallmarks of CFS.” This is not true. Post exertional malaise is not a hallmark of CFS. In CFS (Fukuda), the definition most widely recognized and used in the US, post exertional malaise is minor and optional. If something is optional it is not a hallmark. Symptoms that are listed in the CFS definitions, some may be neurological but not necessarily (see # 2). In total it would not reflect a neurological illness.

Cited research shows findings in some patients (see NCHS statement, #3). Again, researchers may use different terms and definitions so findings may not be generalizable and will not be specifically identifiable in CFS. And some ME findings would be excluded from some CFS definitions. Research findings then may not be applied or will not be recognized or included within the CFS definition or treatment guidelines. If an illness excludes that which you have, then you do not have that illness.

These citations used by the Coalition 4 ME/CFS would be like citing the association of schizophrenia with infectious agents. Infectious agents have been found, but schizophrenia would not be reclassified as an infectious disease.

5. CFSAC has made recommendations to change the name to ME/CFS and code CFS to ME as neurological. “The CFSAC recommended that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, to be in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification)” (May 2011 meeting minutes) (See # 3.) We should not try to be in line with the Canadian ICD-10-CA. They have their own health system and conventions. They have a specific ME/CFS definition (Canadian Criteria CCC) that they use based on a Health Canada panel. Health Canada established the “Terms of Reference.” Any researcher may use these criteria but they are not recognized or referenced in the US or by US health agencies in any official capacity. There is no ICD code for ME/CFS so is not a recognized diagnostic entity.

Otherwise ME/CFS is another made up term with different meanings and should not be used in the US any official capacity.

CFSAC should recognized the importance of having the codes accurately reflect the definition congruent with the US federal health system. They should only recommend that which is in accordance with sound scientific and taxonomic principles, and not based on politics or PR or influenced by signs, slogans, posters or tee shirts.

6. The Coalition 4 ME/CFS mentions that NIH has used the term ME/CFS. Other agencies have not. HHS should not allow different agencies to change names or definitions or adopt or use different terminology or meanings, especially any that would run counter to that of other agencies within the department.

7. The Coalition 4 ME/CFS mentions that people use ME/CFS or use ME and CFS interchangeably. Using terms incorrectly and repeating a falsehood does not make it true. In fact, this group is most guilty of publishing and advertising all kinds of ME=CFS=ME/CFS (mis)information. One cannot cite ones own information or errors as an example or for justification. It is as if saying that they are the same makes it so. And repeat: CFS, also known as ME…. so this proves it.(?) Say-so medicine is not acceptable.

Anyone can call it or use whatever term they want (e.g. CFIDS), and researchers can research whatever they want, but federal health agencies should adhere to scientific principles which require specificity and consistency of accurately designating what they are studying and to which patient cohort it applies and what it is called, *and all must match, not used differently or to mean different things. It is this disconnect regarding definition/codes/terminology which has confounded research results and created the inconsistency and confusion, and resulting in the lack of acceptance, understanding or progress. Without agreed upon objective diagnostic criteria that is named specifically and used consistently there can be no compelling science or meaningful research results.

8. The Coalition maintains or agrees that ME is not diagnosed in the US or seen in medical records. This is not true. ME is diagnosed in the US. It is not well recognized, which is a problem, but this does not justify keeping it as a CFS (mis)diagnosis. It is of course not as common as a vague, broadly defined fatigue syndrome, but prevalence does not justify eliminating ME.

9. Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC) ["Myalgic Encephalomyelitis - International Consensus Criteria" Journal of Internal Medicine, Volume 20, Issue 4, p 327-338 [http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full]

The Coalition 4 ME/CFS claims that the ME-ICC supports their position. ME-ICC states: “The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and 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).”

“The scope of this paper is limited to criteria of ME and their application. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other healthcare providers, improve the consistency of diagnoses in adult and paediatric patients internationally and facilitate clearer identification of patients for research studies.”

“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. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME”.

The ME-ICC conveys that ME has been erroneously called CFS and should not be. ME should be called ME, NOT CFS. It highlights the misuse of “fatigue” and the confusion it has caused. It specifically objects to and rejects having fatigue attached to the name so it would NOT support the use or creation of ME/CFS, which is the basis for all of the Coalition’s ME=CFS=ME/CFS positions.

This ME-ICC definition is clearly about the distinction between them. The ME-ICC is about the definition, scope and application of ME. The stated purpose of the ME-ICC was to “help clarify the unique signature of ME.” Not CFS. The Coalition 4 ME/CFS proposal to merge ME and CFS with the same ICD codes would be the opposite of what the ME-ICC is calling for.

10. The Coalition claims that coding ME and CFS together would offer protection from inclusion in the DSM. It is really the opposite. The WHO and the American Psychiatric Association (APA) are collaborating on the revision process for ICD-11 and DSM-V to ensure consistency and to achieve ‘harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.’

The concern with the harmonization of the ICD and DSM is related to the overlap and mixing of these terms and definitions that allow the constant shifting. CFS definitions are so broad and vaguely worded that those with mental health issues can fit the definition, thus allowing psychiatrists to cherry pick the patients. But if they fit the definition, they “have” CFS. The mixing and connecting of ME to CFS is what would CAUSE the possibility of inclusion of ME in the DSM. What is being proposed by the Coalition 4 ME/CFS is to create a mixed cohort at G93.3, and these conditions could eventually be moved to the mental health category. If ME is recognized as a distinct neurological illness with testable pathology and not an unexplained fatigue syndrome, it would not belong in the DSM.

ESME recently released a statement. ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

ME should not be called CFS. CFS should not be called ME. Thus ME/CFS should be abandoned, which is what the Coalition 4 ME/CFS is using. This proposal by the Coalition 4 ME/CFS to NCHS is the antithesis of the ME-ICC and ESME statement.

To voice your objection to this proposal to code ME and CFS together, contact NCHS , Donna Pickett Deadline for comments is Nov.18. **This deadline has passed.**

DISCUSSION TOPIC:
Association of XMRV with CFS. What does it mean when there is no consensus opinion about an issue like the relationship of XMRV and Chronic Fatigue Syndrome?

Either there is or there is not an association of XMRV with CFS. Read below to view the recently published opinion of Dr. Paul Cheney of The Cheney Clinic in Asheville, NC, who suggests there indeed may (still) be such an association. [Take note of his explanation of NGS (Next Generation Sequencing) testing and how it is more accurate than PCR technology.]

Thanks so much, Cinda Crawford (info below)

The Cheney Clinic, December 5th, 2011, published in Public Relations
Topic: Changing status of XMRV – HGRV research

There is still no consensus in either direction for the existence or non-existence of XMRV associated with CFS cases. Studies out of Europe (Belgium and Germany) and the US (Cornell) as well as elsewhere which are separate from WPI, FDA and NCI are demonstrating evidence that cannot be due to a mouse contaminant for XMRV association with CFS. The strongest supportive study to date was reported by Dr. David Strayer out of Hemispherex Inc, (Philadephia, PA) at IACFS/ME in Ottawa and showed that 7/8 CFS cases and 2/17 controls were positive for XMRV using Next Generation Sequencing (NGS) technology available at Roche Labs in Germany. NGS is not susceptible to mouse contamination and demonstrates that XMRV is in fact integrated into human DNA which means it is a human virus. The Science (Lombardi et al, 2009) study still stands as the best evidence that this virus is transmissible from cell to cell and the studies out of WPI and Belgium demonstrate an immune response (antibodies) to XMRV and a cytokine profile (WPI) that suggests it is pathologic.

I expect that Next Generation Sequencing or NGS, which does not have the flaws of PCR technology in evaluating a poorly understood human virus(es), will be the best way forward to a consensus as to the question of association of CFS with XMRV/HGRV. This preliminary report out of Germany using NGS as well as human immune response data supports the association of XMRV with CFS, despite the flaws exposed in the current primary PCR technology used to define this scientific debate which appears very messy and excessively bio-political to date.

If you’re like me, your life is busy, your health demands that you pay attention to your self quite a bit, but even so, you would really like to know: What’s Happening with CFS News? Today you can find many resources here. Before you do, let’s talk a minute about where you see yourself.

There are four discussion points today plus the link to the CFS Advisory Committee page with the 28 videos… .

Today’s audio podcast is 5 minutes and 20 seconds

1) Do you keep up with everything CFS? I’m betting, “No.” You’re more likely a person with CFS or you’re the caregiver of a patient (child, teenager or adult). You’re doing the best you can to figure out what’s wrong with “you” and you’re trying to get well!

2) You only have so much time and energy available to pay attention to a specific topic, such as what’s really happening in the world of CFS News. You’re glad to know that real and important issues are being discussed, but unless your life allows the activity, you may miss a few things from time to time.

That’s assuming you don’t have such severe brain fog that you can keep up at all. If you can’t, I do my best to bring you the highlights. Such services as either reading and accessing the information here on the website or signing up for my RSS feed, and you’ll still get everything and miss nothing! The information will simply come to you easier, where and when you’re ready to consume it. Find the RSS sign up box with (orange with white stripes) in the right-hand column of this page. Sign up today!

3) You want to lend support to advocacy, awareness or research issues, as best you can. But can you do everything you want to do? Some days, can you meet any of those goals at all?

4) For most people, it’s difficult to feel that we’re getting ahead, especially in the area of research. It’s there; it’s significant. It’s there; it proves nothing. The money is not there at all…because past government officials tried to pull the wool over everyone’s ideas and abscond with the research money for their own pet projects. On and on the story goes. Where or where does the money go?

I urge you to bookmark this page right now: The 2011 November CFS Advisory Committee meeting. There are quite a few videos posted on this page. If you do this, you can watch some now, some later when you have down time. Example: when you’re suffering through your husband’s ball game. Instead, you can quietly don a pair of headphones and really learn something instead! I’m not saying that every bit of this material is worth writing home about, but there is good stuff contained within these multiple video presentations. Over the Internet is a great way to see and hear it, if you didn’t attend the CFSAC Advisory Committee meeting and conference in person.

Stay tuned for more and learn what’s happening in the field of CFS News.
AND LEAVE A COMMENT!

Thanks, Cinda Crawford
Your host of the Health Matters Show

It turns out, there probably was a contamination link in the WPI studies documenting evidence of XMRV as a cause of Chronic Fatigue Syndrome (CFS). Subsequent evidence points in that direction. That doesn’t mean all hope is lost in XMRV playing some role in causing CFS or any other illness. Yet it’s highly likely that a true problem existed within the initial research because of contamination in the laboratory studies at WPI.

Our job is to continue to have hope that “science” does its job well. Let’s face it; none of us want erroneous results. None of us want errors to be made that conjure up false findings and anyone being able to ultimately say, “See. I told you Chronic Fatigue Syndrome isn’t real!”

I urge you to read part of the text below and then check out the entire post at Phoenix Rising. The authors have presented this vital CFS information in a straight-forward format that is not difficult to understand:

Find all of this post on Phoenix Rising’s blog.

Thanks, Cinda Crawford
Your host of the Health Matters Show

As I sit down to think of all the things in my life that I am thankful for, I’m also narrowing it down to what may appeal to most people who suffer with Chronic Fatigue Syndrome, Fibromyalgia or other illnesses. Now, that may seem odd, but I’ll share with you why I think it is important to look at this topic. One, it’s Thanksgiving, a time when we’re stuffed full of good food and probably had a pretty good day sharing our bounty with family and friends. And two, it’s time to be grateful for what we have. We’re alive, we have time to grow and become the people we really want to be and with the growing, doing and becoming, we can look forward to a life that carries its own rewards.

Let me explain a little more. As strange as it may sound at first,

“What?” you say. “Are you nuts?”

(This is short audio today, 2 minutes 48 seconds. I hope you listen to it & read the rest of the post. Then, leave a comment for what you feel thankful for. Many blessings, Cinda Crawford)

Nutt-y maybe, but not nuts. If I had not gotten so ill with Chronic Fatigue Syndrome, I would never have acquired the ability to have the compassion that I do now for people who cancel out on a fun outing (even a Thanksgiving Day meal!) at the last minute because they’re suffering with an unexpected symptom flareup -or- for people who can’t manage a part-time job because they can’t get out of bed for days at the time.

If I had not gotten so ill with Fibromyalgia, I would never have had the compassion to deal with people who have trouble thinking of the right word to say in a sentence, or who insist on telling you about the different “spots” that hurt in their body, but their doctors can’t seem to find out what is wrong -or- treat adequately.

If I had not suffered so many years in chronic pain myself, I would think a chronic pain sufferer might instead be a chronic complainer and not a worthy person to get to know or be around as a friend. If I had not had such a dysfunctional immune system, I might think that people who regularly get sick with cold or flu-like symptoms, etc., (*I know a lady who marks her calendar… . After twenty years, she’s sick for one week of every month!) are putting on airs or possibly are hypochondriacs.

After suffering for so long and now living well on the other side of illness, I can honestly say that I’m thankful for the tough and convoluted path I took to get well. My walk through the valleys was surely challenging. I’m sure yours is, too. Surely there were times when I doubted if I could or would get better.

I can assure you that having compassion and feeling grateful are not only great skills to acquire, they’re a blessing. Taking empty, non-important moments and replacing them with an attitude of gratitude is a blessing worthy of paying such a steep price.

Now, at some time during each holiday season, I give thanks. For each family visit and the shared time together, I give thanks. For each desire in life that I am lucky enough to accomplish, I am elated. For each friend I meet and each person I help, I am humbled, yet bubbling with joy. I feel grateful and I Am Thankful For YOU!

Thank you so much,
Cinda Crawford, host of the Health Matters Show

The following letter from a doctor was posted and sent to all on the mailing list of Co-Cure.org, a large mailing/member clearing house for information on Chronic Fatigue Syndrome (CFS), ME, Fibromyalgia (FMS or FM), Gulf War Syndrome and more.

I thought you’d find this information interesting so I’ve copied it here as it was posted. Enjoy, Cinda Crawford
~~~
November 17, 2011

Donna Pickett RHIA, MPH
Medical Classification Administrator National Center for Health Statistics -­? CDC 3311 Toledo Road
Hyattsville, MD 20782
Via email: Donna Pickett
cc: NCHS

Re: ICD-­?10 CM & ICD-­?9 revisions for CFS (Chronic Fatigue Syndrome)

Dear Ms. Pickett:

I am a physician with 20 years experience treating patients with ME, CFS and FM.

Although there are some similarities, they are dissimilar enough that they should be considered three separate entities. FM is mainly a muscucloskeletal pain condition; CFS is profound fatigue substantially reducing functional capacity. ME is a disease with primarily neurological challenges, dysautonomia and CNS disturbances. For the most part, the primary providers for FM are Rhumatologists; for CFS, internal medicine; for ME neurologists/ID specialists. The providers are appropriately different as it should be because the most effective treatment protocols are quite different.

ME has a clearly defined disease process while CFS by definition has always been a syndrome. A syndrome (for example CFS) is defined by symptoms. A disease (such as ME) is defined by symptoms plus objective and measurable findings. Evidence based medicine requires an appropriate treatment plan which must correspond to the patients diagnosis. Each ICD code represents a specific diagnosis, based on the corresponding definition. If a doctor fails to properly indicate the true nature of the patients illness through proper coding it will inevitably result in difficulty getting approval for appropriate treatment. Patients with a discreet neurological illness will not be properly identified and treated if diagnosed with a fatigue syndrome.

For children with ME, a CFS diagnosis can be disastrous. Not only does the general public not get it, but if you look at the various department of social services guidelines for recognizing abuse and neglect, it includes many of the symptoms used to define CFS. Major red flags are fatigue, sleepiness in class, tardiness, decreased or erratic attendance. All you need is one over anxious teacher to misinterpret and parents have little recourse. It happens way too frequently. Children may be forcibly subjected to inappropriate or harmful treatments and forced to attend school, which can cause a great deal of damage, sometimes permanent. Or children may be taken into State custody. There are few pediatricians who understand ME so it is difficult to find support or backup. No one who cares about children should allow kids with ME to be diagnosed with CFS or in any way connecting or combining them as this proposal by the Coalition 4 ME/CFS would do.

For years persons with CFS (or CFIDS) have been subject to ignorance and derision from the medical profession, educators and the general public. Mention CFS often elicits an“ oh yeah, I was real tired too. I think I might have had that.”

Understandably, people with CFS are frustrated. The initiative to link ME with CFS may simply be a desperation attempt to get more respect. From the medical perspective, this is the wrong move. If you look at all the definitions of these illnesses it includes a huge array of signs and symptoms. It is absurd to think that there is one cause and one cure for the people with such diversity of complaints and problems. Throwing ME and CFS together into one heading or one diagnosis is the last thing that should be done. The only way to establish better diagnostic and treatment protocols, or for basic and clinical research to make any sense is to have well established and well circumscribed cohorts, which this will not provide. This is what, for the most part, has been done, and the results for patients in terms of diagnosis or effective treatment have been abysmal. This must stop.

I feel the frustration of persons with CFS but it does not make sense to link up CFS with ME anymore than CFS with MS or with anything other distinct diagnosis that may share the vague symptom of fatigue. To dredge up an old idea, CFS should have a more appropriate name. One that is taken seriously, but it should be one that stands alone, and one which would not be automatically confused or mis-referenced as “chronic fatigue.” People with CFS deserve this. CFS could certainly and deservedly be renamed or redefined as appropriate; however, misappropriating or linking to another disease is not the answer.

I recommend that ME should remain as G93.3 under “Diseases of the Nervous System.”
I recommend denying the request to classify CFS as G93.9. If CFS should be reclassified/redefined/renamed then do so without involving or interfering with any other illness, especially one for which a CFS diagnosis would be inappropriate or harmful.
I disagree with NCHS “Option 2.” ME should not be moved or subdivided or put under a “chronic fatigue syndromes” category.

Sincerely,
Dr. Paul J. McLaughlin

We’re entering the busiest season of the year and that’s all the more reason to consider relaxing for health. I know this because I’m as prone to getting caught up in the hoo-ha as anyone else. Just yesterday I went to the mall and stayed too long. That’s when I officially became my own worst enemy. I lost my keys!

Well, you know how the tiredness and pain of Fibromyalgia and CFS can take you to that really bad place and you truly need a transport machine to instantly “poof” you back home? I didn’t have one and I began to get frantic as I walked around, overly tired, with an aching back and legs and surely a big frown on my face. Why me? Why did I have to lose my keys in the middle of the 8th row of sweaters in the store’s last display? It happens.

So today, dear ones, I have a treat for you. Click on the Health Matters Show podcast link below and hear me read a creative visualization to help you relax and help your health be all it can be. The title of it is Healing Firemen. I believe you’ll like it, plus I know you can benefit from such a nourishing experience. Block out a portion of your day to do this. Find a quiet spot for a few moments to really do some relaxing for health. Don’t let people or responsibilities distract you from taking care of yourself. But,…don’t drive while you’re listening either!

You should get an immediate benefit from this experience. If you’d like to create some of these visualizations for yourself, check out Julie Lusk’s great book below.

(12 minutes 18 seconds jewel of an audio- Be sure to DOWNLOAD and keep this one!)

I hope you enjoyed my creative visualization reading from Julie Lusk’s wonderful book, 30 Scripts for Relaxation, Imagery and Inner Healing. Get your own copy at Amazon.com…

Thanks so much me for joining the podcast today. Please leave a comment if you like this type of broadcast -and- about how your “relaxing for health” needs are or are not being met!

Cinda Crawford, your host of the Health Matters Show

Is there harm done from misdiagnosis or mislabeling when a doctor says you have CFS and you really have ME? How are you, the patient and the sick person, supposed to know the difference? Today, the debate rages on and there is plenty to be concerned about. Check out Donna Pickett and her note to Co-Cure about this tragedy going on right now. You have until Friday, 11/18 to take action that just might make a difference.

See Important Note Below…

There is NOTHING more important than an accurate diagnosis. CFS is not an accurate diagnosis for ME patients, thus ME and CFS should NOT be combined via the ICD coding. ME patients will never get the care or treatment they they need with a CFS diagnosis. A good deal of research that is published on CFS has NO bearing on ME, so funding will not even solve it.

ME patients do not have CFS but they may die from it. How many ME patients have died or worsened significantly, not from ME, but from the misdiagnosis of CFS and the neglect and harmful treatment that it has caused.

If we do not stop this proposal to recode CFS to ME, this tragedy will continue.

Contact: NCHS at nchsicd9CM@cdc.gov
Donna Pickett, dfp4@cdc.gov
ASAP!!! ASAP!!! Deadline is Friday, Nov 18.

Sample letter to NCHS:

Dear Sir/Madam,

I am an ME patient and have an ME diagnosis or – as a patient/family member/ stakeholder in this matter, I strongly object to the combination of ME and CFS under ICD code G93.3. NCHS has coded ME and CFS accurately and separately in the original intent for ICD-10-CM. Please keep the ME and CFS codes/classification/diagnoses separate.

ME has been coded at G93.3 and should not be changed or subdivided as in NCHS Option2.

The classification for ME should be and remain as G93.3 under Diseases of the Nervous System. Based on science and policy, it is not clinically valid to classify CFS at code G93.3 as the Coalition 4 ME/CFS proposal has recommended. Such changes should not be made to ICD-9 or 10CM or to the future ICD-11.
~~~~

If this ME matters interests you, send in your response NOW.
Thanks, Cinda Crawford
Host of the Health Matters Show

If you suffer with Fibromyalgia or CFS (Chronic Fatigue Syndrome), you likely have a major symptom that drives you bonkers at times and it’s called memory problems. It’s much more than an occasional lapse in memory. Today let’s explore a way to look at this that will make better sense than thinking you’re dumb, getting old, losing your mind, or not able to remember anything! And, if we’re successful at this, you should come away with useful knowledge and lesser degree of feeling frightened and helpless with what this illness symptom implies.

(Audio podcast is 8 minutes 45 seconds long)

“I felt so dumb when it was happening…so helpless. My mind just wasn’t there, you know…with me. It was like it had checked out and left my body. And worse than that, I had no idea what to do to get out of the trouble I was in. Plus, I couldn’t figure out why everyone was looking at me so strangely.” At that point, she cried and we hugged a long time.
~~~~~

When I, personally, was so sick for fifteen long years, I found myself in situations like the one my client described many times. I would feel scared, humiliated and definitely worried to the bone, worried that I might lose every cognitive ability I had ever had. In the beginning months, all I could do was read and retain the meaning of the headlines in the newspaper. Sentences strung together in a paragraph no longer made sense and forget about remembering the content. I was lucky to keep general impressions only; details were non-existent.

If this sounds like similar memory problems that you have experienced, ask yourself the following questions, but do so in the comfort and security of your home or in a quiet moment. These are thought provoking, for sure, and you’ll want to take your time to answer them.

I know I’m not crazy, but WHY has my body and brain apparently stopped working together?
WHAT has happened to drive them so far off course? Like the connection between them has been broken?
And WHEN will I feel better and more like myself again? Or will I be in this condition…forever??

The answers to what is going on, what to do about it -and- if it’s possible for you to get significantly better are not simple. Scientists actually have few answers to memory problems. But even so, I urge you to keep reading the following, important background information.

At birth a newborn infant’s immune system usually functions well, maybe even for several months before the first taste of sickness arrives. Doctors tell us this is a carry over of the biological influence and immunity of the mother. As the baby grows and matures, that immune system protection dissipates and, in some cases, the baby’s own system doesn’t function as efficiently. If so, sickness ensues.

Your and my health, as we keep growing from babies to older children, to teenagers and finally to adults, encounter times when the immune system is negatively affected by tough and sometimes virulent disease-promoting entities, like viruses, bacteria, spirochetes, mycoplasmas, etc. And when one of us gets sick, a common symptom is some degree of cognitive impairment of the brain. [Whether we're talking about disease mechanisms actually attacking tissues of the brain (e.g. a herpes virus) or simply the person's central nervous system not working well (e.g. a functional breakdown of the cerebral process, nerve conduction and pathway damage such as what is seen in cases of Multiple Sclerosis), a sick person can be left at one end of the spectrum with a short, mildly dysfunctional physical situation all the way to a totally dysfunctional memory system that would disturb the hardiest of souls!]

And getting back to you, if you have Fibromyalgia or CFS, know that memory problems are extremely common problems. Not rare, not occasional nuisances, but very common problems. If you’re fortunate, the symptoms may come or go, but when significant cognitive dysfunction appears, you, the patient, feel as if your brain is barely functioning. As mentioned in the last paragraph, this could be from the inflammatory process of the body and brain fighting a (example) herpes virus or it can be something else entirely. Either way, your immune system is likely on guard, active and sometimes too active.

Your best bet is aiming to improve and bolster the functionality of your immune system while calming it at the same time. Think about it. In this case, y our immune system is doing the hard work, all the heavy lifting here. Your brain is simply the organ that is most affected when you suffer with significant memory problems. *To find out more about how I help clients successfully refine and re-tune their immune system, I invite you to visit my Free 15 Minute Health Consultation page. I’m happy to help you if I can.

Thank you for joining the Health Matters Show today,
Cinda Crawford, your host

For many people, CFS or Chronic Fatigue Syndrome may not start out as a autoimmune illness, but may be one in disguise…at least for the long haul. Here’s why. Now I want you to imagine this. You get sick with some type of horrible virus, bacterial infection, spirochete, mycoplasma or some other dastardly thing meant to assault you and your immune system. The name of this “thing” is not relevant for the moment. What is important is that your body fights it and you struggle to get well. Many (a.k.a. most) of us do recover from this type of original infection, yet we never get 100% well. Why? What is going on? Why can’t the immune system do what it normally does: fight off this infection and go about its business?

The November 6th post at Phoenix Rising (via Cort Johnson) may have an important clue and answer to this dilemma.

How this information came about is because of new drug results with Rituximab, a chemotherapy drug. It’s being used with success for people suffering with an autoimmune illness. When Rituximab is used with CFS patients, many of them experience an improvement, too!

I have to read this information with a smile on my face because in the energy healing work that I do, the autoimmune healing portion of it incorporates work on people suffering with Chronic Fatigue Syndrome. The same language and requests for healing end up working on both autoimmune illnesses and CFS!!! It’s always nice to see some validation (of sorts) of what I believe to be true and of my work. I’ll be waiting on the final results just like you.

Before you run out and seek treatment with Rituximab, do your research. After all, it is a chemotherapy drug and unless you show your doctor what is being done with it, prescribing it to you will make no sense and you’ll get turned down flat. Caution is in order here.

Also, consider that we’re talking about adding another drug to your daily regimen- of what you’re already taking. Consider this step carefully. Science has only cracked open the door so far. Whether CFS is an autoimmune illness, whether Rituximab helps it or not, the final proof is yet to come.

Thanks, Cinda Crawford

To read the proposal to code ME and CFS together, contact NCHS at nchsicd9CM@cdc.gov or Donna Pickett at dfp4@cdc.gov. Plu, I’ve included Donna’s ideas below. Such a timely topic, indeed. The deadline for sending them your comments is Nov.18, 2011.

The Coalition 4 ME/CFS submitted a proposal to NCHS to reclassify Chronic Fatigue Syndrome (CFS) as neurological and code it to Myalgic Encephalomyelitis (ME) at G93.3.
[Coalition 4 ME/CFS ICD-10-CM & ICD-9 revisions for Chronic Fatigue Syndrome (CFS) http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]

The premise that the Coalition 4 ME/CFS has used is that ME is the same as CFS and thus the ME=CFS=ME/CFS model. They are not the same. The definitions are different. ME is not a fatigue syndrome. Some symptoms may overlap, as with many illness (and considering that CFS is so broad), but they are different in nature and outcome.

The Coalition states that “there are over 4000 scientific papers on ME/CFS” [page 2, http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf]).

This is not true, with regard to ME/CFS (as the Canadian Criteria) or just the generalized use (or misuse) of the term. A medline search for ME/CFS listed 46, not 4000. Is this yet another haphazard, general unofficial substitution of the term ME/CFS?

The rationale upon which they base their request to change the ICD codes for CFS can be broken down as follows:

1. The Coalition 4 ME/CFS states that the purpose for the changes to the ICD codes is to bring the codes in line with the definition [http://coalition4mecfs.org/ICDPR.html].

This proposal does not accomplish this intention. NCHS has coded them properly. The current US ICD codes are already in line with the definitions. NCHS has coded ME and CFS accurately in the ICD-9 CM and the intent for the ICD-10-CM. CFS does not strictly define a neurological illness. Codes should accurately reflect and match the definition and classification. CFS is by definition a symptom syndrome and coding is accurate at R53.82 (under general signs symptoms).

The Coalition 4 ME/CFS states:
“… the goal is to ensure alignment with the best case definition for CFS, which includes both viral and bacterial triggers.” [http://coalition4mecfs.org/ICDPR.html]

No CFS definitions include viral and bacterial triggers.

The Coalition 4 ME/CFS does not designate what the “best case definition” is as there are several, which may be different. NCHS is part of the CDC. This NCHS Committee is to properly code existing illnesses. It should adhere to US/HHS policies. This would require staying within the confines of the current recognized and accepted HHS/CDC definitions. Codes do not define illnesses nor change case definitions.

If the Coalition wanted to specify a “best case definition,” they should have done so and THEN push for its acceptance and THEN code it accordingly. If this is what they were getting at, they skipped a critical step in the process.

2. The Coalition 4 ME/CFS states that the purpose of the proposal to NCHS is to code CFS as neurological.

“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 International Classification of Diseases-10-CM (ICD-10-CM) and International Classification of Diseases-9-CM (ICD-9-CM).”

http://coalition4mecfs.org/ICDPR.html

None of the CFS definitions define what would be recognized as identifying a neurological disease.

A recent survey of members of a Neurological Association demonstrated that 84% do not view CFS as a neurological illness. (“Chronic Fatigue Syndrome: Labels meanings and consequences,” Journal of Psychosomatic Research, 9 April, 2011) The abstract notes that *”this is at odds with the WHO classification.” They do not view it as neurological because the definition does not support it as neurological DESPITE the WHO classification. Codes will not override the definition.

3. WHO ICD 10 and other countries have adopted the coding of CFS to ME at G93.3.

There are many CFS definitions and other countries can make their own decisions and code them accordingly. Likewise the US should base it on the convention of our own policies, not based on other countries. The purpose of the Clinical Modification is to allow for such convention and changes or modifications can be determined according to each countries standards and policies.

NCHS has given the following explanation:
“While it appears most appropriate to classify chronic fatigue syndrome in ICD-10-CM in the same way that it is classified in ICD-10, this placement is not without problems. The primary concern with the current WHO placement in ICD-10 has been that the abnormalities of the brain in chronic fatigue syndrome patients most often cited in the literature are not found in all chronic fatigue syndrome patients. While chronic fatigue syndrome may be a heterogeneous group of disorders, some but not all are neurological in nature. Likewise, not all patients have experienced a viral infection prior to being diagnosed with chronic fatigue syndrome, nor are immune system anomalies universally found. Also of potential concern is the similarity between the type of neurological findings in chronic fatigue syndrome and in depression, which is a psychiatric disorder.”
[A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards, http://www.co-cure.org/ICD_code.pdf]

This statement by NCHS is accurate and this is why the US should not make the changes requested by the Coalition 4 NCHD as it is not in line with with the definitions used by the US federal health agencies.

The Coalition 4 ME/CFS claims that adopting the WHO convention of coding CFS to ME together at G93.3 would improve the diagnosis and patient care (see # 2). Actually in countries that have made these changes there has been no improvement in research, diagnosis, recognition or the general CFS worldview.

4. The Coalition 4 ME/CFS claims that research findings support their request.

[http://coalition4mecfs.org/ICD_final_w-cover_and_addendum_7-15-2011.pdf page 5]

A section in the proposal is entitled neurological pathology. It states “Pain, debilitating fatigue and *especially post exertional malaise are hallmarks of CFS.”

This is not true. Post exertional malaise is not a hallmark of CFS. In CFS (Fukuda), the definition most widely recognized and used in the US, post exertional malaise is minor and optional. If something is optional it is not a hallmark.

Symptoms that are listed in the CFS definitions, some may be neurological but not necessarily (see # 2). In total it would not reflect a neurological illness.

Cited research shows findings in some patients (see NCHS statement, #3). Again, researchers may use different terms and definitions so findings may not be generalizable and will not be specifically identifiable in CFS. And some ME findings would be excluded from some CFS definitions. Research findings then may not be applied or will not be recognized or included within the CFS definition or treatment guidelines. If an illness excludes that which you have, then you do not have that illness.

These citations used by the Coalition 4 ME/CFS would be like citing the association of schizophrenia with infectious agents. Infectious agents have been found, but schizophrenia would not be reclassified as an infectious disease.

5. CFSAC has made recommendations to change the name to ME/CFS and code CFS to ME as neurological.

“The CFSAC recommended that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, to be in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification)” (May 2011 meeting minutes)

(See # 3.)

We should not try to be in line with the Canadian ICD-10-CA. They have their own health system and conventions. They have a specific ME/CFS definition (Canadian Criteria CCC) that they use based on a Health Canada panel. Health Canada established the “Terms of Reference.” Any researcher may use these criteria but they are not recognized or referenced in the US or by US health agencies in any official capacity. There is no ICD code for ME/CFS so is not a recognized diagnosic entity.

Otherwise ME/CFS is another made up term with different meanings and should not be used in the US any official capacity.

CFSAC should recognized the importance of having the codes accurately reflect the definition congruent with the US federal health system. They should only recommend that which is in accordance with sound scientific and taxonomic principles, and not based on politics or PR or influenced by signs, slogans, posters or tee shirts.

6. The Coalition 4 ME/CFS mentions that NIH has used the term ME/CFS.

Other agencies have not. HHS should not allow different agencies to change names or definitions or adopt or use different terminology or meanings, especially any that would run counter to that of other agencies within the department.

7. The Coalition 4 ME/CFS mentions that people use ME/CFS or use ME and CFS interchangeably.

Using terms incorrectly and repeating a falsehood does not make it true. In fact, this group is most guilty of publishing and advertising all kinds of ME=CFS=ME/CFS (mis)information. One cannot cite ones own information or errors as an example or for justificattion. It is as if saying that they are the same makes it so. And repeat: CFS, also known as ME…. so this proves it.(?) Say-so medicine is not acceptable.

Anyone can call it or use whatever term they want (e.g. CFIDS), and researchers can research whatever they want, but federal health agencies should adhere to scientific principles which require specificity and consistency of accurately designating what they are studying and to which patient cohort it applies and what it is called, *and all must match, not used differently or to mean different things. It is this disconnect regarding definition/codes/terminology which has confounded research results and created the inconsistency and confusion, and resulting in the lack of acceptance, understanding or progress. Without agreed upon objective diagnostic criteria that is named specifically and used consistently there can be no compelling science or meaningful research results.

8. The Coalition maintains or agrees that ME is not diagnosed in the US or seen in medical records.

This is not true. ME is diagnosed in the US. It is not well recognized, which is a problem, but this does not justify keeping it as a CFS (mis)diagnosis. It is of course not as common as a vague, broadly defined fatigue syndrome, but prevalence does not justify eliminating ME.

9. Myalgic Encephalomyelitis – International Consensus Criteria (ME-ICC) ["Myalgic Encephalomyelitis - International Consensus Criteria", Journal of Internal Medicine, Volume 20, Issue 4, p 327-338, http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full]

The Coalition 4 ME/CFS claims that the ME-ICC supports their position.

ME-ICC states:
“The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and 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).”

“The scope of this paper is limited to criteria of ME and their application. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other healthcare providers, improve the consistency of diagnoses in adult and paediatric patients internationally and facilitate clearer identification of patients for research studies.”

“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. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day.The International Consensus Criteria (Table 1) identify the unique and distinctive characteristic patterns of symptom clusters of ME”.

The ME-ICC conveys that ME has been erroneously called CFS and should not be. ME should be called ME, NOT CFS. It highlights the misuse of “fatigue” and the confusion it has caused. It specifically objects to and rejects having fatigue attached to the name so it would NOT support the use or creation of ME/CFS, which is the basis for all of the Coalition’s ME=CFS=ME/CFS positions.

This ME-ICC definition is clearly about the distinction between them. The ME-ICC is about the definition, scope and application of ME. The stated purpose of the ME-ICC was to “help clarify the unique signature of ME.” Not CFS. The Coalition 4 ME/CFS proposal to merge ME and CFS with the same ICD codes would be the opposite of what the ME-ICC is calling for.

10. The Coalition claims that coding ME and CFS together would offer protection from inclusion in the DSM.

It is really the opposite. The WHO and the American Psychiatric Association (APA) are collaborating on the revision process for ICD-11 and DSM-V to ensure consistency and to achieve ‘harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria.’

The concern with the harmonization of the ICD and DSM is related to the overlap and mixing of these terms and definitions that allow the constant shifting. CFS definitions are so broad and vaguely worded that those with mental health issues can fit the definition, thus allowing psychiatrists to cherry pick the patients. But if they fit the definition, they “have” CFS.

The mixing and connecting of ME to CFS is what would CAUSE the possibility of inclusion of ME in the DSM. What is being proposed by the Coalition 4 ME/CFS is to create a mixed cohort at G93.3, and these conditions could eventually be moved to the mental health category. If ME is recognized as a distinct neurological illness with testable pathology and not an unexplained fatigue syndrome, it would not belong in the DSM.

ESME recently released a statement.
ESME recommend that: Researchers use the ICC exclusively and call the disease ME in all written documents about their research. Government agencies/foundations give research grants to scientists using the ICC. Government agencies/institutions officially adopt the ICC and post them on official websites. Doctors use the ICC to diagnose patients and write only ME G93.3 in patient journals or in all written documents about these patients. Advocates/patient associations speak with one voice by agreeing to call the disease ME.

ME should not be called CFS. CFS should not be called ME. Thus ME/CFS should be abandoned, which is what the Coalition 4 ME/CFS is using. This proposal by the Coalition 4 ME/CFS to NCHS is the antithesis of the ME-ICC and ESME statement.

Thank you so much for joining me today in this timely topic. Please leave your own comment below, then copy it to the NCHS email, as requested. What do you call the illness? What do believe it should be called? Email: nchsicd9CM@cdc.gov

Cinda Crawford, show host