I recently read Christian Hollingsworth’s post, 25 Reasons I Work From Home. Most of his reasons strongly resonated with me.

My personal reasons for working from home are similar but a little different. I suspect they might be for you, too, if you have Fibro or CFS. Christian apparently suffers with chronic Lyme Disease and parts of that illness are similar to Fibromyalgia and Chronic Fatigue Syndrome. Yet, there are differences between them all three of them.

I guess that’s why his list of reasons for working from home might be similar to yet different than mine. Check out my list and see what you think. Even recovering Fibromyalgia folks have to be careful with the amount of physical exertion they undertake and the amount of stress they allow in their lives. When in the recovery process, Chronic Fatigue Syndrome people must always be cautious of their energy level and constantly monitor how tired they are. Getting exhausted can bring on relapse of Fibro or CFS! I’m sure that if you’ve ever suffered with either of these health conditions, you know that my words ring true.

After you read through the list below, please leave your comments. Share your thoughts of how you’re affected by some of these same issues. Are you staying at home and trying to get well? Are you attempting to work and, if so, how are you surviving the rigors and expectations of being employed? Holding down an out-in-the-world job and doing it well are tough aspirations for well people and that much more so when you have a chronic illness!

Thanks so much for dropping by the blog today and thanks to Christian Hollingsworth for his wonderful post. I hope you’re feeling well today, Chris.

Cinda Crawford, host of the Health Matters Show

1. I have freedom to sleep or nap when I need rest.

2. I can learn information, do research or visit videos online during my down time.

3. Pajamas. Enough said.

4. I don’t feel it necessary to be judged by people for my looks or what I’m wearing (unless I do a video).

5. Sometimes, during my best moments, I randomly pop out of my chair to dance, stretch or do a yoga pose. Having that freedom makes me smile.

6. If I choose to lounge in bed for an hour or a day, I can take my laptop with me for company and maybe cruise the Internet, Facebook, Twitter or more.

7. I have freedom to plan my own schedule, be it for work, play or for healing time. (*Note: I didn’t really begin to heal in my life until I stopped working a regular 9 to 5 job and started concentrating on what it would take for me to get better.)

8. Techie gadgets and computers are tax deductible (assuming I continue to earn an income from my at-home work).

9. Anything related to producing blog content is tax deductible, such as paper, ink, envelopes, gas to go to interviews, etc.

10. I spend no money and time commuting to and from a work location everyday.

11. Sometimes I grab my laptop and go on an excursion just for me. Getting off by myself can be very therapeutic.

12. I can attend to family matters if needed like cleaning the house (on good days), fixing a meal (when I want to do so) and cleaning up dog throw-up (rather necessary when it happens).

13. I make my own schedule. This is a big plus! Sometimes I spend the first part of the day working and take the rest of the day off to do something else. I can reverse or change the schedule without anyone asking “why”.

14. I sometimes choose to stay up late watching television or reading the latest and greatest book.

15. There’s a certain degree of satisfaction and freedom knowing I’m not tied down to the demands of what someone else thinks is necessary for me to do. Freedom is the key word here, not that I don’t expect certain things out of myself.

16. I can sing, hum or goof off whenever I want. The dogs and I have a great time acting silly!

17. Neighboring cubicle workers won’t complain if they smell something delicious I’m eating or ask “Why are you dressed like that today?” or “Why aren’t you working? The boss is gonna’ find out!” Such comments don’t help the peaceful atmosphere I need around me.

18. If I feel stressed, I can do deep breathing, a meditation or simply stretch. If it’s just stress and I otherwise feel fine, I might take my dog for a walk or phone a friend.

19. The kitchen is only a few steps away. Now…that can be positive or negative when I’m having a don’t-I-feel-sorry-for-myself day. But it does give me a better opportunity to plan healthy foods and drink plenty of healthy, purified water.

20. The bathroom is only a few steps away. Always a plus, particularly considering the volume of liquids I drink.

21. The bed, for naps, is only a few steps away. I generally try not to sleep during the day, but if I need a nap, surely having the bed close by is a big benefit.

22. My books, for reference or research, are only an arm’s length away. I don’t have to lug them to an alternate location and risk firing up any trigger points in my neck, shoulders or back. I don’t have to worry about getting exhausted in the effort and give up before I get to my new location.

23. If I so desire, I’m able to move completely and change the location of my work on a whim. This, yes, I can do. But it is comforting to always know where all of my things are. I’ve converted the spared bedroom in my house to my office and, if company drops by, I simply can shut the door to prying eyes.

24. Due to the nature of the illnesses I’m recovering from, Fibromyalgia and Chronic Fatigue Syndrome, working from home is a true gift. Most days I work at my desk, but I don’t have to during those times when I need an extra dose of rest, recuperation and health. The gift of “working from home” is a gift I give myself.

25. Yes, working from home gives me freedom, security, happiness and it promotes my mind, body and spirit awareness of what is and is not good for me. That’s called mindfulness, a topic you’ve heard me talk about many times. When I choose to venture out in the world as best I can or, oppositely, when I choose to stay home, both circumstances are in my control. If I had to work out into the world and had to perform under the stresses and strains of a job, the situation easily could be maddening and trigger a renewed episode of illness. (I worked an extremely stressful and demanding job when I got so ill twenty-five years ago.)

As a contrast, my home is a safe and loving place that gives me a better chance of creating and maintaining not only something meaningful for me and others, but also something profitable in today’s tough economic climate.

Working from my home-based office and business is the answer for me.

As you and I approach the Christmas season with a goal of surviving it, one thing you may be asking yourself was hinted at last week: if Fibromyalgia Syndrome is not a terminal condition, then why am I still sick? There could be many reasons for whatever answer you come up with. It’s true that some people get over the condition and go on with their lives, while others keep right on suffering. Many people even get worse over time and watch their health decline further! Let’s change that and start now during the Christmas season holiday.

(This audio podcast is 6 minutes 21 seconds)

Okay. Let’s start off by playing a what-if game… what if the quality of your life eroded and got worse, the drama in your life story intensified and your future changed for the absolute worst? Unless you make the right choices now (Christmas or otherwise), you might never get another opportunity to come back and do it right again. Such a time as the Christmas season can be the very event that preempts and precipitates your life and symptoms either tunneling down into the trenches of ultimate pain and agony -or- spiraling upwards towards renewed hope and a re-invigorated life!

The truth is that we all complain sometimes. As soon as you can, though, make a point to lay aside being negative. Lay aside looking for some magic, cure-all drug. Lay aside thoughts that you’ll only be happy when and if… . Instead, put all of this out of your mind because instead you’re concentrating on bigger, better and different things. Things to help you succeed. Things to improve your health and help you get healthy again. I know you want to do whatever it will take to feel better and reclaim your life! Being negative and dependent will not get you where you want to go.

And as for the fluffy stuff? I’m talking about anything that promises you symptom relief or a cure, but isn’t doing the job for you. *In 2012, I’ll be offering you something special which I and lots of people are finding to be priceless. Stay tuned. Personally, I find that few supplements (or drugs) conquer Fibromyalgia. Help maybe, but not really slay the symptoms.

SUGGESTION: Take a few minutes to add up what you’re spending on Fibromyalgia, both on drugs and over-the-counter supplements. After you make a comprehensive list, tuck it away where you can get to it easily. We’ll get back to this. I promise…in a couple weeks, I plan to have all of the data in place to tell you about something F-A-N-T-A-S-T-I-C!!! I’ve got my fingers crossed, too, and I am very, very excited!

Your to-do assignment from last week began with your making a personal list of who or what might trip you up this holiday. When you sat down to make that list, what life points did you focus on? People? Places? Did you concentrate more on emotional problems that could trip you up? Are all of these items really important now that you’ve listed them or did you include any points that actually don’t matter that much?

If you have a few of the latter on your list, go ahead and cross them out now. You can return to the smaller issues later. Today instead, concentrate on what’s crucial in YOU making it through the holidays and working positively on your health. Resolve to get to the crux of the problem NOW. Why not? If you become less distracted with the stuff in life that does not matter, you have a better chance of getting this right. Better health will follow.

Now go ahead and keep working on your list, but save it. Especially, put it up where no one will see it if you’re writing down and thinking about some very personal issues. Then check back next week to compare your answers to mine. Just don’t stop this process. It’s too important. This is your health we’re talking about. Your future depends on you getting this right!

Plus, I’m hoping that you come up with some ideas that I don’t think of. If so, submit and share them in comment form. Get recognition for your hard work while you’re growing and getting control over your Fibromyalgia.

Thanks. I’m Cinda Crawford, host of the Health Matters Show and thanks for attending “Fibromyalgia: Christmas Season Broadcast 2 of 3″

Today’s Christmas season broadcast is one of three weeks of presentations when I’m highlighting Fibromyalgia Syndrome. I’m convinced that it is not a terminal condition. Even though it may seem that way when you’re in the depths of the illness, some people do get over it and go on to resume healthier lives.

Unfortunately, other people keep suffering. They can even get worse and watch their health decline further and further into an illness pit that’s hard to climb out of!!

Today, let’s talk about how to prevent staying in the Fibromyalgia rut, particularly at this time of year…the holiday, Christmas season! No one wants to feel “bad” and no one wants to be the drag on their holiday party. Fun and good times are coming!

If a person only gives up a few of life’s pleasures because of a small (lean) to moderate case of Fibromyalgia (FMS), he of she may not have to make too many sacrifices. The necessary changes needed to survive regular “living” may be doable and tolerable enough to maintain. Such a person can live a reasonably good life.

If that’s not true for you and you’re much sicker than that, could your situation be worse because you haven’t discovered the knack of adjusting to match the needs of your illness??

That question is appropriate for the people who struggle with more and worse symptoms. Adjusting may not be the end-all, universal, cure-all answer. It won’t make that much difference, yet adjusting is still wise and I’ll tell you why.

In the end, some people can change their level of personal expectations, required duties and everyday activities and get by well enough, while others don’t seem to be able to easily change or adjust barely at all. Instead, they go to the extreme and give and give and give…until they feel like an overused rubber band about to break. *Today’s idea is aimed more at the people who (so far) have refused to make any adjustments to their lives and, therefore, the illness is pushing back at them hard!)

I encourage you to honestly think through this issue. If you’re prone to diving into the holidays head first and feeling all panicky, start a Christmas Season List. Jot down all of the things, people and activities in your life that you believe to negatively affect your condition. But don’t just list these issues => =>

• Figure out why and how you’re affected by the issues (or people) yesterday, last month, last holiday season. Thinking about them and planning what you should do to circumvent them is the key here to insure you’ll have a better, healthier Christmas season holiday with fewer symptoms. Don’t let it/them get to you!
• Plan your holiday get togethers. Plan the energy requirements you’ll need to prepare and last through the event. Plan for the day ahead, the day after, and especially plan your money outlay. You don’t want to be the queen bee of giving and end up suffering the month after because you have no money for medications or a massage!
• Pre-warn people that you may or may not feel like attending if you’re especially symptomatic that day. *If you’re going to someone’s house, ask them ahead of time about the possibility of lying down, eating special foods or drinking a drink that you brought with you, etc. Pre-plan. Your host wants you there and will likely accommodate your needs, if asked.
• Keep some cute thank-you or I’m-sorry-cards handy. This will help you to easily jot down notes as to why you couldn’t attend something or had to duck out early. With all the stress and strain of the holidays, even healthy people have to forgo all the things they want to do once in awhile!

Being in your presence, hearing from you, knowing you’re suffering and being kept in the loop is what your friends and family really want from you this holiday season. No one is perfect. Don’t expect to be. This is your “Fibromyalgia” plan and a beginning step to gaining control and beginning to feel better…even during the holidays! (You don’t want to go backwards.)

My best Christmas wishes for you and your family,
Cinda Crawford, host of the Health Matters Show‘

PS- Next Friday return here to find edition #2 of the Fibromyalgia: Christmas Season Broadcast.

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

Is there an app for healing an illness like Fibromyalgia, Chronic Fatigue Syndrome, Lyme disease, Lupus, or Arthritis? If not, why not? As I wander through my mind today, come with me and let’s explore the thought process involved in why a large population of people are sick, stay sick, and continue to go to doctors without finding success for healing their illness.

It makes me miss Steve Jobs already. Yes, he was a technological guru, but he was so much more. He dreamed up technologies before we knew we needed them! He not only envisioned the end result product, but he made it, invented the technology to support it and then, as the super marketer, told us our lives would never be the same unless we owned it!

What we need now…

• Answers based on where we are now in terms of knowing more about the illness(es) that we face everyday.
• Answers based on thinking forward…into the future. What is missing? Are we on the right track for coming up with the answers of tomorrow by relying so much on medicine, drugs, etc., the so-called answers of today? To pursue this line of thought, we must first be brave and ask the right questions…out loud! (First, to ourselves; then, to others.)

Go ahead. Envision the end result of your longings: Being Healed. Rejoining Life. Having a smile on your face. Okay, this is your assignment. To get there, that is…if you choose to accept this mission…figure out the real problems surrounding your illness:

Why did I get sick? Why can’t I heal? Where should I be looking for ‘my’ answers?

• CONCLUSION: Let’s find the answers and come to the right conclusion based on outcome results of what we want to experience: improvements in health status. What end result would you like to have? How do you see yourself next week, two months from, two years from now or two decades?

Well, I hope that’s not sick and trending in the direction of ‘more well’ and certainly happier. Take a moment to check out the audio podcast today for some additional information. Let me know what you think of all the proposed questions. How will you answer them if you don’t have “an app for healing illness”?

Thanks, Cinda Crawford
Your host of the Health Matters Show

For many of us, it is time for winter again. That could be good or bad depending on your view of the season, your ability to get out and enjoy it or your confinement to bed or home. I like the fall season with its colors, but I know winter is coming soon. So, what do you and I do to prepare?

That question came to me a few weeks ago after I watched the Virgina Tech football game when they played Miami. The stadium was packed, the fans were antsy for a win and the day was right for making a lot of noise, stomping, jumping and probably causing the whole stadium to shake! Yes, with seconds left, the crowd went nuts. The whole place was surely rocking!

Now…how is that like or unlike you or me? If You and I are ready for what comes our way, we have reason to make a lot of noise and celebrate, too! (Please listen to the Health Matters Show audio podcast today; then watch the VA Tech video below. If you haven’t seen it, it’s a video that is hard to believe.)
(Audio podcast 5 minutes 11 seconds)

Below I grabbed this VA Tech video off of YouTube. I urge you to watch it closely as the game comes down to the wire. Two opponents compete, both wanting victory.

*Your opponent is illness/ sickness/ Fibromyalgia/ Chronic Fatigue Syndrome, etc. You fight long and hard, but the battle comes down to the wire and the question comes down to… is illness or wellness better prepared for victory? Which party consistently makes good use of time, resources and the people around them?

In this case, the winner was VA Tech. Other times, that’s not the case, but that day they won the ball game.

On days when your own game is down to the wire, you want to win and I want to see you be victorious, too. So I’m asking, how prepared are you? Are you spending your time fretting over the illness or learning how to get well? Do you have good resources to help you succeed? Who do you have on your team (side) helping you? When are you going to get off the bleachers (the couch) and take a brave, new step towards doing something different?

So, even if you’re asking, “Is it time for winter again?”, be prepared and ready. You’re in the game for the long haul. It’s what you make of it along the way that counts.

Thanks so much for joining me today,
Cinda Crawford, your host of the Health Matters Show

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

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

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

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

(8 minutes 54 second podcast)

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

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

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

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

Cinda Crawford, your host

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

(expose’ copy to follow)

Professor Wessely over a barrel?

Margaret Williams 24th September 2011

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I have constructed this Fibromyalgia Symptoms video to give you or anyone (who you want to see it) a good, initial overview of Fibromyalgia symptoms. Fibromyalgia is a complicated illness and sometimes it is difficult to know where to begin within yourself, with your family, friends or caregivers. I have high hopes that you can use this information to improve communication with your doctors.

Note: Most caregivers only know what you tell them. Suggestion? Set them in front of your computer to watch this video. It’s not overly dramatized. Simply factual and accurate. Hopefully after the presentation, you will both be open to a deeper discussion about your Fibromyalgia symptoms and how the illness affects your life!

Before you go today, be sure to grab yourself a copy of everything included in today’s Fibromyalgia video (plus I’ve included room for your personal notes) by clicking here! Feel free to make copies of this great little guide to use 1) to help you decide where you are with the illness, 2) what you need to study further and 3) how to approach your next doctor’s visit!

Yes, it’s a goodie that’s worth keeping. And finally, let me encourage you to check back with the Health Matters Show for blog posts, audio podcasts and video podcasts concerning Fibromyalgia Symptoms and more. This is one video of many!

Thanks, Cinda Crawford
Your host

When I ask most people, “What do you know about Fibromyalgia?”, I get answers from not so much -to- a fair amount. Chances are, if you’re suffering with something, you make a point of learning more about it. I hope you’re doing that here at the Health Matters Show for Fibromyalgia.

On Friday I feature a brand new video entitled: Fibromyalgia Symptoms. It’s short, precise, factual and I believe you’ll find it valuable. To get the most use of it for yourself, your caregivers and your medical support team, be sure to also grab a copy of the pdf document that will be included in the blog post. (*Your caregivers probably have a rough time understanding the necessary facts about the illness and how it affects your life. How can they figure out what to do for you, if they don’t have a basic understanding of Fibromyalgia???)

In preparation for Friday’s Health Matters Show video broadcast, if you don’t have a pdf reader software program on your computer, go ahead and grab yourself a “free” copy here, the Adobe Reader.

Thanks so much and set your schedule to return here on Friday for the video and more!

Cinda Crawford, your host and author of, “What do you know about Fibromyalgia? and the new “Fibromyalgia Symptoms video”, launching shortly.

All kinds of illnesses can exhibit signs of Immune System Dysfunction, but surely Chronic Fatigue Syndrome and ME are two of the biggest and most aggravating conditions. What an understatement! Still, though, it’s true. Immune system dysfunction can show up in all kinds of illnesses, yet the one garnering the most attention is Chronic Fatigue (ME/CFS). That surely has something to do with the fact that in many circles, the illness is referred to as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

If you have it or suspect you have it, you know what I’m talking about. You get cold and flu symptoms more than more people. You ache for unknown reasons. Your glands swell and you can suffer with almost non-existent level of energy. Surely this is the immune system running amok and exhibiting a mighty level of dysfunction. At its worst, you’re out for the count…virtually horizontal throughout any 24-hour period. Fevers, sweats, aches, screaming pains, dizzy, nauseous, easy to faint, blurry-eyed, sore-throats, swollen glands, and your list can go on to include add-on illnesses like Sjogren’s Syndrome, Crohn’s Disease, Fibromyalgia, autoimmune problems of many types, arthritis (both kinds), Lupus, Lyme Disease, and on and on.

What causes all this? So much immune system dysfunction? On the Health Matters Show podcast today, I discuss this problem. Join me. Then share this broadcast with your friends. It may open up a discussion and help us all to understand this tough problem a bit better.

(9 minutes 44 seconds)

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

Cort Johnson of Phoenix Rising discusses today the 75 years of ME, Myalgic Encephalomyelitis history, and how it dovetails with the knowledge and experience of CFS, Chronic Fatigue Syndrome. In Cort’s words:

~~~~~~

‘ME’ or myalgic encephalomyelitis been given new life in the research community by the publication of the International Consensus Criteria for ME (ICC). (Link below.)

But is it the same ME? The first major attempt to give the ME a coherent focus occurred in 1959 with Acheson’s long review journal article on ‘benign myalgic encephalomyelitis’ *outbreaks.* From that paper to the Incline Village outbreak in the mid 1980’s the focus was mostly on describing outbreaks but the publication of a definition for chronic fatigue syndrome in 1988 lead to an almost complete focus on the non-epidemic forms of the illness. The ‘outbreaks’ continued on but they no longer figured in the literature and, despite the return of the name they were associated with, they were not given any mention in the ICC.

In this article we look at snapshots of ME over the years. Has the changed focus from the outbreaks to the non-epidemic form of the disorder changed our conception of ME? And if so – how?

So, I ask you, are these all the same disease processes? For my answer, see below, plus go ahead and grab yourself a copy of this new and important ICC Guildeline report:

I believe that there is a “sudden onset” type of ME/CFS that ushers in a stark period of immediate illness. Think the 24-hour flu that never goes away times 10! I also believe “gradual onset” is a reality for many people, too. Your health begins to decline and soon you’re wondering where the bottom will show up or not. Other people simply don’t get as ill as either of these two classes of patients before they stabilize. Does that mean we’re talking about different illnesses, different disease processes? I submit to you, possibly we are not!

When the Immune System goes haywire, anything is possible. We don’t all get sick in the same ways even when exposed to the same “cause” or trigger(s). Within the realm of the voluminous amount of published material about CFS, ME and parts in between, scientists and researchers have not categorized this specifically and without inserting a degree of doubt. Today’s International Consensus Criteria for ME Guideline goes a long ways toward that purpose. The Journal of Internal Medicine offers the following abstract about ME, CFS and the ICC’s published criteria:

The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.

The scope of this paper is limited to criteria of ME and their application. Accordingly, the criteria reflect the complex symptomatology. Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other health care providers, improve consistency of diagnoses in adult and paediatric patients internationally, and facilitate clearer identification of patients for research studies.

Today I urge you to do 2 things before exiting this blog:

• Leave a comment below. Tell us about your illness onset, ongoing struggle, diagnosis or whatever. Your story may help someone else and let’s face it, each of our stories matter and need to be heard!
• Then, go to the newly published ICC ME Guidelines and print out several copies. You need one for you to study and at least two more for your doctor and insurance company. If you lose this link, return here to the Health Matters Show to get access.

Thank you so much for visiting the Health Matters Show today,
Cinda Crawford
*Feel free to share this on Facebook, Twitter or wherever. This is important!

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.

Two of the most recognized, hallmark symptoms of Chronic Fatigue Syndrome are fatigue (or lethargy) and immune system dysfunction. Today let’s not address fatigue but immune system dysfunction, possibly one of the more elusive symptoms of any chronic illness of this type. Can it be seen or witnessed in the dis-ease or ill health of the patient? Yes. Can it be measured? Yes. Can it be explained? No. What causes it? Scientists don’t know. Can the immune system dysfunction be corrected and the body’s “germ” fighting ability be returned to normal? Sometimes, over time, a person’s body will gradually begin to return to a more normal state, but what about the people whose bodies and systems never recover? What has gone awry and affected them so severely?

Well…scientific researchers and doctor investigators do not yet have those answers. (*I have my own ideas and talk about the possibility of Chronic Fatigue Syndrome healing on another page.) But today let’s look at a recent research study entitled, Chronic fatigue syndrome, the immune system and viral infection, as published in the journal Brain Behavior Immunology. (This excerpt is offered ahead of standard print by E-pub.) *Notice how they do not talk about getting well or healing.

Note, as published: Immune system abnormalities in ME and CFS are most likely not a single specific aberration, but rather a pattern possibly reflecting the microbe(s)/toxins involved as well as disease stage of the patient.

Brain Behav Immun. 2011 Jul 2.

Chronic fatigue syndrome, the immune system and viral infection.

Bansal AS, Bradley AS, Bishop KN, Kiani S, Ford B., Dept. of Immunology, Epsom and St. Helier University Hospitals NHS, Trust, Carshalton, Surrey, SM5 1AA and Chronic Illness Research Team, Stratford Campus, University of East London, London E15 4LZ, UK.

Abstract

The chronic fatigue syndrome (CFS), as defined by recent criteria, is a heterogeneous disorder with a common set of symptoms that often either follows a viral infection or a period of stress. Despite many years of intense investigation there is little consensus on the presence, nature and degree of immune dysfunction in this condition.

However, slightly increased parameters of inflammation and pro-inflammatory cytokines such as interleukin (IL) 1, IL6 and tumour necrosis factor (TNF) ? are likely present. Additionally, impaired natural killer cell function appears evident. Alterations in T cell numbers have been described by some and not others.

While the prevalence of positive serology for the common herpes viruses appears no different from healthy controls, there is some evidence of viral persistence and inadequate containment of viral replication. The ability of certain herpes viruses to impair the development of T cell memory may explain this viral persistence and the continuation of symptoms.

New therapies based on this understanding are more likely to produce benefit than current methods.

Copyright © 2011. Published by Elsevier Inc.
~~~~~~

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

*Please leave your thoughts and comments here about the immune system’s involvement in Chronic Fatigue Syndrome/ CFS/ CFIDS. Why do you think your body has given in to immune system dysfunction, is not righting itself and is not healing?

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