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

Whether you have Fibromyalgia, Chronic Fatigue Syndrome or some other health problem, it can be quite beneficial to hear excellent mind body spirit information.

When it’s accessible locally in a wellness seminar, that’s good. And if some of the information is made available to the whole world through the Internet? That’s good, too. That means the information is not only appropriate for your needs at the wellness seminar, but also timely and handy, when & where you need to access it day or night after you get back home! Truly, good quality health advice is a superb gift, one that keeps on giving, long after the moment or day has passed. {*Note: just for looking, “liking” Laura’s page and checking out the wellness seminar event, there are several “free” gifts right now! (Once on the page, go to Events.)}

Today I’m interviewing Laura Gentile, a certified life coach, personal trainer and aerobics instructor. This is the second time I’ve interviewed Laura for the Health Matters Show. (Feel free to look up her first interview, Finding Balance in Illness. She and her material were excellent!)

Today, we’re talking about her new program that she and Holistic Wellness & Motivational Fitness are putting on here in Roanoke, Virginia, on October 15, 2011 at the Hotel Roanoke. It’s called, Wellness Seminar and Conference!

This event is designed to encourage and remind you of the importance of why living healthy in mind, body and spirit is a key ingredient to longevity.

***Be sure to check out the business’s Facebook page and then click on the Events page for sign-up info, plus great pre- and post-seminar specials available to you really soon.

As one of the program speakers, I look forward to working with Laura and her crew for this spectacular event. They’re such a consummate bunch of professionals who truly do want you to have the best mind body and spirit information around!

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

PLEASE SHARE THIS POST AND EVENT NEWS!!!

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!

As quoted from Pro-Health, an organization that cares about people with Chronic Fatigue Syndrome, hey are promoting CFS awareness.

The actors in a play about chronic fatigue syndrome performed July 15 at Missouri State University are all healthy. The playwright, Rivka Solomon, who lives in the Boston area, is not.

This information is to introduce an article by Sarah Okeson, which was published Aug 8 by the Springfield (MO) News Leader, Tiredness You Don’t Get Over and tell you more about this exciting play to create CFS awareness.

The article highlights the first performance of “I Represent: Invisible No More,” and goes on to provide helpful information about ME/CFS. It also provides contact and meeting information for the local FM/CFS support group.

Any support group looking for an opportunity to raise awareness in their community can get the script from Rivka and find a local theater group to produce it. (Student actors, especially, love opportunities to act.)

To Get a Copy of the Script, email Rivka Rivka (at) ThatTakesOvaries (dot) org.

*Remember: this next year, May 12, 2012, is the 20th anniversary of International Awareness Day for ME/CFS, Fibromyalgia, Multiple Chemical Sensitivity and Gulf War Syndrome!!

**Write & let me know if you plan to put on this play. It sounds like a great advocacy project and one that would be highly effective in promoting CFS Awareness in many communities.

Cinda Crawford, your host of the Health Matters Show

Because of her twenty years of living, learning and teaching principles of how to live healthfully with illnesses like Fibromyalgia and Chronic Fatigue Syndrome, Janice Lynne Lundy is able to reveal an absolute wealth of information in this video interview. She is one smart lady! No matter your illness, I suspect she has answers to help you. She possesses a veritable treasure trove of goodies or, as she and I call it, tools for your tool box!

(This is the 20 minute version. If you want the whole thing => THE 65 MINUTE VIDEO INTERVIEW => then continue down the page. Janice even offers you a guided meditation during the long version video!)

The full 65 minute video is below, however it has no helpful links in it for you. So…please go to Buddha Chick Training™ for Women with Health Challenges to read about and sign up for Janice’s new fall course. This is phenomenal information and surely a loving and caring experience to help you gradually become healthier. Discover the personal level of self-care that you can enjoy. You’ll learn some wonderful skills to use anytime, anywhere!

I urge you to make up your mind now to benefit in a mighty way from Janice’s kind offer.

Okay, the wait is over. Now…it is my pleasure to bring you the following full, uninterrupted, 65-minute video interview with Janice Lynne Lundy. The “free” guided meditation is towards the end of the presentation. ENJOY!!!

Sending you many health blessings, Cinda Crawford
You host of the Health Matters Show

When “life” hits you hard, you may find yourself in a world of hurt, aggravation and disillusionment. I’m close to that place today, but I won’t go there. Let me explain… .

My wonderful interviewee, Janice Lynne Lundy the Buddha Chick, and I have been trying to get a double-video conference recorded for you all week for the Health Matters Show that airs on Friday.

After two days of trouble and getting nothing done but a ton of emails and phone calls, we’re finally figuring out that it’s because a PC computer and a MAC don’t always talk well together. Go figure.

I am thankful that this has happened, because the messages for me in this situation are the same powerful ones that Janice teaches everyday:

• 1) Transparency, being comfortable with who you are, recognizing your blessings and being THANKFUL for them. (In my case, inabilities and all.) You and I have to work with what we have. Sometimes it seems that we only have problems in life and our personal health, but I assure you that’s not true. We are blessed in numerous way and have many “things” to be thankful for! It’s important to acknowledge & realize our blessings. Then we can practice being thankful for them and relish in greater peace.
• 2) Self-love and self-compassion. Today’s Resolution: I will love myself. I will not wallow in pity. And, especially now, I will not chastise myself for not knowing everything. After all, I’m not an Internet expert, not a professional videographer and I certainly do not know everything about how to do this, link programs, write code, etc. Like most people, I take a few elementary courses, but mostly, I must learn all of this as I go.

Thanks, Cinda Crawford
Your host of the Health Matters Show

*Please plan to return to the Health Matters Show on Friday. I’ll have something up…that’s for sure!

And in the meantime, when life hits you hard, indulge in self-love, praise and a long, deep, cleansing, life-affirming breath.

The following is a CFS update and letter to the editor sent to the Boston Globe. It essentially gives a concise update of the current CFS situation, but also praises the newspaper for updating the public on some aspects of the current research on this serious medical illness. It is written by psychiatrist Dr. Alan Gurwitt and then posted to Co-Cure. Thanks to all for highlighting CFS as an ongoing and horrific illness that affects so many people (figures below) and calls attention to the need for more research and to not be labeled with more psychiatric labels.

Do people with CFS have mental and emotional issues? You bet. Are they the ’cause’ of CFS? Surely they can only be involved indirectly and circumstantially. No one wills his or her body to be so sick!

Many still suffer as we probe the cause of chronic fatigue
Boston Globe Letters to the Editor
June 6, 2011

RE “REPORT deals blow to fatigue sufferers’’ (Page A10, June 1):

Deborah Kotz and the Globe are to be congratulated for the article on chronic fatigue syndrome, which updates readers on some aspects of the current research on this serious medical illness. It is estimated that 800,000 to 1 million Americans, and 17 million worldwide, suffer from this syndrome, also known as myalgic encephalopathy. In Massachusetts alone there are 27,000 people, with often more than one in a family. As many as 80 percent go undiagnosed or misdiagnosed. While the severity ranges from mild to severe to the point of being bedridden, most patients experience major impairments over many years in their ability to function.

The fallacy that the cause of chronic fatigue is psychological has set back much-needed research. It is only recently that the National Institutes of Health has approached it seriously. The Centers for Disease Control and Prevention has yet to mount an effective research program.

While, as you report, recent studies raise serious questions about the link between the XMRV retrovirus and chronic fatigue syndrome, your reporter is quite right to indicate that some think it premature to dismiss XMRV until a definitive NIH-sponsored study is completed. Whatever the outcome, examining XMRV has reinvigorated the scientific and medical research communities to address this condition. Meanwhile, there is much evidence that other infectious agents, singly or in combination, and some chemical agents may be among the causes.

Dr. Alan Gurwitt
Newton Highlands
~~~~~~

The writer of this CFS update and letter to the editor is a board member with the Massachusetts CFIDS/ME & FM Association, an all-volunteer group focusing on CFIDS, Chronic Fatigue and Immune Dysfunction Syndrome, or Myalgic Encephalopathy, and Fibromyalgia.

Thank you, Cinda Crawford
Host of the Health Matters Show

Is there an indication that XMRV, as espoused to cause Chronic Fatigue Syndrome, could be a human retrovirus mistake? Yes, there is. Hear hosts, Vincent Racaniello, Alan Dove, Rich Condit, and Stephen Goff of Virology Blog explain how and why the results on XMRV could be and probably are an honest mistake.

Endogenous retroviruses may be a variant of a retrovirus which became permanently integrated with its host and is inherited from generation to generation as part of the genome of the host.

So what is a human retrovirus?

Retroviruses are single-stranded RNA viruses that reverse-transcribe their RNA into DNA for integration into the host’s genome. Most retroviruses (such as HIV-1) infect somatic cells, but in very rare cases, it is thought that exogenous retroviruses have infected germline cells (cells that make eggs and sperm) allowing integrated retroviral genetic sequences to be passed on to subsequent progeny, thereby becoming ‘endogenous’. Endogenous retroviruses have persisted in the genome of their hosts for thousands of years. However, they are generally only infectious for a short time after integration as they acquire many inactivating mutations during host DNA replication. They can also be partially excised from the genome by a process known as recombinational deletion. They are thought to play a key role in evolution.[1] Some human ERVs have been implicated in ALS[2], certain autoimmune diseases, and cancers.[3][4]

I realize that no CFS patient wants to hear this, but neither can any of us afford experiments that do not hold up to scientific scrutiny. No! We need good science that we can count on. We need ME/CFS clinical trials now on retroviruses -or- whatever. Don’t delay!

Thanks, Cinda Crawford
Host of the Health Matters Show

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

Some people think that getting well from CFS or Chronic Fatigue Syndrome is impossible. A pipe dream. Naysayers warn, “No one ever gets well.” I’m here to tell you that simply is not true. 40% of people who come down with CFS get “well” by the end of the fourth year. Other people can get well after that, but the percentages go down the longer you’re sick.

This and other information was some of the data revealed to us by Dr. Charles Lapp this last week.

Catch more of the 2011 Fibromyalgia and Chronic Fatigue Syndrome Awareness seminar at this link. (When you get there, put in the password “drlapp”. It’s 53+ minutes that are jam-packed with goodies!)

I truly hope that this information will convince you that getting well from CFS is not impossible at all. How you go about it is up to you. This process is more in your hands than you ever thought possible. If you want to talk to me about how I did it and how you might approach this big undertaking using alternative medical approaches, contact me at cinda@getwellhealth.com. I’m happy to talk to you and help you get it accomplished without drugs or terminally expensive therapies!

Cinda Crawford
Your host of the Health Matters Show

PS- if you like this type of upbeat information and programming, please comment accordingly and share it on Facebook and Twitter. Maybe you can even “Digg” it. Thanks!

Today is the day I host and interview Dr. Charles Lapp for the 2011 seminar to celebrate Fibromyalgia and Chronic Fatigue Syndrome Awareness Day. It’s not too late to join us. Check out AskDrLapp.com, ask your question of him and then sign up on the list to receive the notice about the seminar this evening, Wednesday, May 11th at 8:30 pm. The last notice goes out at 5:30, so don’t delay. Go to the website now!

I also want to give you a link to yesterday’s Chronic Fatigue Syndrome Advisory Committee Webcast. It’s a long and involved video, but if you’re interested in all items relevant to CFS, this will be your cup of tea. (*If you can’t view this automatically, it may be because you don’t have a “viewer” designated. Go to http://nih.granicus.com/ViewPublisher.php?view_id=26 to follow the process.)

Now don’t forget…join Dr. Lapp and I this evening for an information packed video seminar which is sure to inform, delight and inspire you to take action to improve your health from Fibromyalgia and CFS.

Thanks so much. Please consider putting this announcement on your Facebook page and tweeting it on Twitter! It’s important that we spread the word about all good information.

Cinda Crawford, host of the Health Matters Show

Here’s basically a repeat of 2009′s post for Mother’s Day. It is too special for me not to repost. Now my Mom is gone almost 6 years. I really, really miss her, but I think she would think kindly about the work I do to help others.

We human beings can miss many things in life after we lose them, like our health for instance. When you leave here, please join me at “Ask Dr. Lapp“, ask your questions about Fibro & CFS and then sign up for the special seminar on Wednesday. Dr. Lapp will be answering all your questions in honor of International Fibromyalgia and Chronic Fatigue Syndrome Awareness Day to be celebrated next week.

Our seminar is on Wednesday, May 11th.

Thank so much and enjoy this wonderful day that God has made,
Cinda Crawford
~~~~~~

A heartfelt thank you to each mother living in our world. We are all blessed because you’re in it, because you sacrificed much of your life to bring your children into this world.

A special thank you to the mothers who endure Chronic Fatigue, Fibromyalgia or some other illness. Yours is not a burden easily shared. You don’t expect anything in return for what you’re giving up.

You Only Want Love.
Only Respect.
Only an appreciation for who you are as a woman and child of God.

May today, you have all those things. HAPPY MOTHER’S DAY!

Sending you the sweet and healing roses of this picture everyday,
Cinda Crawford

In addition to the fantastic information Dr. Lapp and I provided you last week on Fibromyalgia, Chronic Fatigue Syndrome, XMRV, Ampligen and the new drugs treating Fibro, today Dr. Lapp discusses drug side effects, a highly interesting topic. Millions of people must face living with the symptoms of Fibro & CFS each day, or ignore them, or find some other way to tone down these horrible symptoms. Through work with the big pharmaceutical conglomerations, Dr. Lapp has been extensively involved in the testing and implementation of Lyrica, Cymbalta and Savella. His work continues with Ampligen.

I hope you enjoy this additional audio file featuring the knowledge of this smart, experienced doctor. If you want to seek him out, find Dr. Lapp at the Hunter Hopkins Clinic in Charlotte, NC or on his website, DrLapp.net.

(6 minutes 57 seconds)

Thank you, Cinda Crawford your host

*Be sure you go to Ask Dr. Lapp to ask your questions and get on my list for notifying you about special event programming and seminars like this Awareness Day special coming up May 11th! I promise to never spam you and to always provide you with good quality and interesting programming. Thanks so much, Cinda.

**If you’d like, see a few of my previous posts about drug side effects below. This truly is a hot topic. Many people do not feel that they can put up with the side effects of these specialized drugs, yet other people get over them and go on to do well. To read every single post on this topic, put “drug side effects” or the name of the drug you want to look up in the search box on this website.

• When You Can’t Take Your Medicine
• Gabapentin Neurontin: New Study Indicates Negative Brain Results
• Drug Side Effects
• Alternatives to Expensive Drugs: 2 Good Choices

Do you have questions about Chronic Fatigue Syndrome? Where do you go to get really good answers?

Upon getting the news that you suffer with this horrible illness, you probably will go to several sources for information and help:

Doctors, books and the Internet. Questions about Chronic Fatigue Syndrome can be some of the most complicated and hard to solve in today’s healthcare environment. Getting your questions answered is the first step towards you feeling better and heading in a new direction of wellness.

One question you might ask is: Should you rely on prescription drugs? Maybe. Maybe not. Check back in here Friday to catch the last part of my interview with Dr. Charles Lapp who discusses the pros and cons of taking Lyrica, Cymbalta, and Savella, the three drugs currently designated to “treat” Fibromyalgia symptoms, plus more information on other possible symptom-relieving compounds that can help CFS, too. The two illnesses seem to be intricately related.

Also, check out the new question and answer website that I’ve set up in anticipation of Awareness Day.

The seminar interview/event will be held May 11th in honor of International Awareness Day on May 12th. Details will be out soon! Signup now so that you get an invitation to join us. Hear Dr. Charles Lapp answer your questions about Chronic Fatigue Syndrome and more!

(**You have to “ask” a question if you want an answer! And you have to sign up if you want to hear his reply!**)

Thanks,
Cinda Crawford, host of the Health Matters Show