The Health Matters Show With Cinda Crawford » Chronic Fatigue Syndrome

New Chronic Fatigue Syndrome and Fibromyalgia Research Papers

Cinda Crawford — Mon, 30 Jan 2012 14:15:44 +0000

Chronic Fatigue Syndrome (CFS/ME) & Fibromyalgia research papers published since December 2011. This list is a worthy assortment of what is going on the world of CFS/ME and Fibromyalgia, plus particular references to female Fibromyalgia patients, Fibromyalgia symptoms and a good reference to Vitamin D. Pay special attention to the listings mentioning XMRV, Milnacipran and complex regional pain syndrome.

I am reporting on some of these research reports individually here on the Health Matters Show blog and podcast, on Twitter and on Facebook. How many of these references have you read about…so far? What can this information mean to your life and health?

Cinda Crawford, host of the Health Matters Show
————————————————-

___ Giacomelli C, Bazzichi L, Giusti L, Ciregia F, Baldini C, Da Valle Y, De Feo F, Sernissi F, Rossi A, Bombardieri S, Lucacchini A.
MALDI-TOF and SELDI-TOF analysis: ‘tandem’ techniques to identify potential biomarker in fibromyalgia. Also see the ME-CFSCommunity.com for more information on bio-markers. Excellent videos there, too.

Reumatismo. 2011 Nov 9;63(3):165-70.
___ Aparicio VA, Ortega FB, Carbonell-Baeza A, Camiletti D, Ruiz JR, Delgado-Fernandez M.
Relationship of weight status with mental and physical health in #female fibromyalgia patients.
Obes Facts. 2011;4(6):443-8.

___ Marchesoni A, Atzeni F, Spadaro A, Lubrano E, Provenzano G, Cauli A, Olivieri I, Melchiorre D, Salvarani C, Scarpa R, Sarzi-Puttini P, Montepaone M, Porru G, D’Angelo S, Catanoso M, Costa L, Manara M, Varisco V, Rotunno L, De Lucia O, De Marco G.
Identification of the clinical features distinguishing Psoriatic Arthritis and Fibromyalgia.
J Rheumatol. 2012 Jan 15.

___ Ellingson LD, Shields MR, Stegner AJ, Cook DB.
Physical activity, sustained sedentary behavior, and pain modulation in women With Fibromyalgia. #female Fibromyalgia patients
J Pain. 2012 Jan 12.

___ Culpepper L.
Presentation and diagnosis of fibromyalgia.
J Clin Psychiatry. 2011 Dec;72(12):e38.

___ Yilmaz H, Yilmaz SD, Polat HA, Salli A, Erkin G, Ugurlu H.
The effects of Fibromyalgia Syndrome on female sexuality: A controlled study. #female Fibromyalgia patients
J Sex Med. 2012 Jan 12.

___ Zhou Y, Steffen I, Montalvo L, Lee TH, Zemel R, Switzer WM, Tang S, Jia H, Heneine W, Winkelman V, Tailor CS, Ikeda Y, Simmons G.
Development and application of a high-throughput microneutralization assay: lack of xenotropic murine leukemia virus-related virus and/or murine leukemia virus detection in blood donors. #XMRV
Transfusion. 2012 Feb;52(2):332-42.

___ Karafin MS, Stramer SL.
The scientific method at work: xenotropic murine leukemia virus-related virus is neither a cause of chronic fatigue
syndrome nor a threat to the blood supply. #XMRV
Transfusion. 2012 Feb;52(2):222-5.

___ Del Prete GQ, Kearney MF, Spindler J, Wiegand A, Chertova E, Roser JD, Estes JD, Hao XP, Trubey CM, Lara A, Lee K, Chaipan C, Bess JW Jr, Nagashima K, Keele BF, Pung R, Smedley J, Pathak VK, Kewalramani VN, Coffin JM, Lifson JD.
Restricted replication of Xenotropic Murine Leukemia Virus-related virus in pigtailed macaques. #XMRV
J Virol. 2012 Jan 11.

___ Theadom A, Cropley M, Parker P, Feigin V.
Women with fibromyalgia syndrome in New Zealand: the symptom experience. #female fibromyalgia patients
N Z Med J. 2011 Dec 16;124(1347):38-47.

___ Butler M.
Classification controversies in relation to fibromyalgia syndrome.
N Z Med J. 2011 Dec 16;124(1347):12-5.

___ Sakuma T, Tonne JM, Malcolm JA, Thatava T, Ohmine S, Peng KW, Ikeda Y.
Long-term infection and vertical transmission of a gammaretrovirus in a foreign host species. #XMRV
PLoS One. 2012;7(1):e29682.

___ Israeli E.
Gulf War Syndrome as a part of the autoimmune (autoinflammatory) syndrome induced by adjuvant (ASIA).
Lupus. 2012;21(2):190-4.

___ Hargrove JB, Bennett RM, Simons DG, Smith SJ, Nagpal S, Deering DE.
A randomized placebo-controlled study of noninvasive cortical electrostimulation in the treatment of fibromyalgia
patients.
Pain Med. 2012 Jan;13(1):115-24.

___ Roth T, Lankford DA, Bhadra P, Whalen E, Resnick EM.
Effect of pregabalin on sleep in patients with fibromyalgia and sleep maintenance disturbance: A randomized, placebo-
controlled, 2-way crossover polysomnography study.
Arthritis Care Res (Hoboken). 2012 Jan 9.

___ Goes SM, Leite N, Shay BL, Homann D, Stefanello JM, Rodacki AL.
Functional capacity, muscle strength and falls in women with fibromyalgia. #female fibromyalgia patients
Clin Biomech (Bristol, Avon). 2012 Jan 7.

___ Sepede G, Racciatti D, Gorgoretti V, Nacci M, Pizzigallo E, Onofrj M, Di Giannantonio M, Niolu C, Salerno RM, Gambi F.
Psychophysical distress and alexithymic traits in chronic fatigue syndrome with and without comorbid depression.
Int J Immunopathol Pharmacol. 2011 Oct-Dec;24(4):1017-25.

___ Sharma V, Biswas D.
Cobalamin deficiency presenting as obsessive compulsive disorder: case report.
Gen Hosp Psychiatry. 2012 Jan 6.

___ Reed C, Birnbaum HG, Ivanova JI, Schiller M, Waldman T, Mullen RE, Swindle R.
Real-world role of tricyclic antidepressants in the treatment of Fibromyalgia.
Pain Pract. 2012 Jan 9.___ Glickman-Simon R, Tenkku LE.
Carpal tunnel syndrome, low back pain, chronic fatigue syndrome, preventing preeclampsia, preventing complex regional pain syndrome #CRPS.
Explore (NY). 2012 Jan;8(1):65-7.

___ Genc H, Nacir B, Duyur Cakit B, Saracoglu M, Erdem HR.
The effects of coexisting Fibromyalgia Syndrome on pain intensity, disability, and treatment outcome in patients
with Chronic Lateral Epicondylitis.
Pain Med. 2012 Jan 5.

___ Dansie EJ, Furberg H, Afari N, Buchwald D, Edwards K, Goldberg J, Schur E, Sullivan PF.
Conditions comorbid with chronic fatigue in a population-based sample.
Psychosomatics. 2012 Jan;53(1):44-50.

___ Abokrysha NT.
Vitamin D deficiency in women with Fibromyalgia in Saudi Arabia. #Vitamin D
Pain Med. 2012 Jan 5.

___ Homann D, Stefanello JM, G?es SM, Leite N.
Impaired functional capacity and exacerbation of pain and exertion during the 6-minute walk test in women with
fibromyalgia [Portuguese]. #female Fibromyalgia patients
Rev Bras Fisioter. 2011 Dec;15(6):474-80.

___ Switzer WM, Zheng H, Simmons G, Zhou Y, Tang S, Shankar A, Kapusinszky B, Delwart EL, Heneine W.
No evidence of murine leukemia virus-related viruses in live attenuated human vaccines. #XMRV
PLoS One. 2011;6(12):e29223.

___ Brooks J, Lycett-Lambert K, Caminiti K, Merks H, McMillan R, Sandstrom P.
No evidence of cross-species transmission of mouse retroviruses to animal workers exposed to mice.
Transfusion. 2012 Feb;52(2):317-25.

___ Fayed N, Andres E, Rojas G, Moreno S, Serrano-Blanco A, Roca M, Garcia-Campayo J.
Brain dysfunction in fibromyalgia and somatization disorder using proton magnetic resonance spectroscopy: a controlled study.
Acta Psychiatr Scand. 2011 Dec 30.

___ Nugraha B, Karst M, Engeli S, Gutenbrunner C.
Brain-derived neurotrophic factor and exercise in fibromyalgia syndrome patients: a mini review.
Rheumatol Int. 2011 Dec 31.

___ Cifre I, Sitges C, Fraiman D, Munoz MA, Balenzuela P, Gonzalez-Roldan A, Martinez-Jauand M, Birbaumer N, Chialvo DR, Montoya P.
Disrupted functional connectivity of the pain network in fibromyalgia. #Fibromyalgia symptoms
Psychosom Med. 2012 Jan;74(1):55-62.

___ White AT, Light AR, Hughen RW, Vanhaitsma TA, Light KC.
Differences in metabolite-detecting, adrenergic, and immune gene expression after moderate exercise in patients with chronic
fatigue syndrome, patients with multiple sclerosis, and healthy controls.
Psychosom Med. 2012 Jan;74(1):46-54.

___ Campos RP, Vazquez Rodriguez MI.
Erratum to: Health-related quality of life in women with fibromyalgia: clinical and psychological factors associated.
Clin Rheumatol. 2011 Dec 30. #female fibromyalgia patients

___ Arredondo M, Hackett J, de Bethencourt FR, Trevino A, Escudero D, Collado A, Qiu X, Swanson P, Soriano V, de Mendoza C.
Prevalence of XMRV infection in different risk populations in Spain. #XMRV
AIDS Res Hum Retroviruses. 2011 Dec 29.

___ Zheng H, Jia H, Shankar A, Heneine W, Switzer WM.
Detection of Murine Leukemia Virus or mouse DNA in commercial RT-PCR reagents and human DNAs. #XMRV
PLoS One. 2011;6(12):e29050.

___ Lo SC, Pripuzova N, Li B, Komaroff AL, Hung GC, Wang R, Alter HJ.
Retraction for Lo et al., Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome
and healthy blood donors. #XMRV

___ Loevinger BL, Shirtcliff EA, Muller D, Alonso C, Coe CL.
Delineating psychological and biomedical profiles in a heterogeneous fibromyalgia population using cluster analysis.
Clin Rheumatol. 2011 Dec 27.

___ Gencay-Can A, Can SS.
Temperament and character profile of patients with fibromyalgia.
Rheumatol Int. 2011 Dec 27.

___ Reyes Del Paso GA, Duschek S.
Responses to a comment on ‘Autonomic cardiovascular control and responses to experimental pain stimulation in fibromyalgia syndrome’.
J Psychosom Res. 2012 Jan;72(1):87.

___ Riva R, Mork PJ, Westgaard RH, Okkenhaug Johansen T, Lundberg U.
Catecholamines and heart rate in #female fibromyalgia patients.
J Psychosom Res. 2012 Jan;72(1):51-7.

___ Geenen R, van Ooijen-van der Linden L, Lumley MA, Bijlsma JW, Van Middendorp H.
The match-mismatch model of emotion processing styles and emotion regulation strategies in fibromyalgia.
J Psychosom Res. 2012 Jan;72(1):45-50.

___ Mostoufi SM, Afari N, Ahumada SM, Reis V, Wetherell JL.
Health and distress predictors of heart rate variability in fibromyalgia and other forms of chronic pain.
J Psychosom Res. 2012 Jan;72(1):39-44.

___ Munguia-Izquierdo D, Santalla A, Legaz-Arrese A.
Evaluation of a wearable body monitoring device during treadmill walking and jogging in patients with fibromyalgia syndrome.
Arch Phys Med Rehabil. 2012 Jan;93(1):115-22.

___ Forman MB, Sutej PG, Jackson EK.
Hypertension, tachycardia, and reversible cardiomyopathy temporally associated with Milnacipran use. #Milnacipran
Tex Heart Inst J. 2011;38(6):714-8.

___ Alberts B.
Retraction.
Science. 2011 Dec 23;334(6063):1636.

___ Senel K, Baygutalp F, Baykal T, Erdal A, Ugur M.
Melatonin levels in premenopausal women with fibromyalgia syndrome.
Rheumatol Int. 2011 Dec 23.

___ Peters S, Wearden A, Morriss R, Dowrick CF, Lovell K, Brooks J, Cahill G, Chew-Graham C.
Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis.
Implement Sci. 2011 Dec 22;6(1):132.

___ Dardano A, Bazzichi L, Bombardieri S, Monzani F.
Symptoms in euthyroid Hashimoto’s Thyroiditis: Is there a role for autoimmunity itself?
Thyroid. 2011 Dec 22.

___ Lommel K, Bandyopadhyay A, Martin C, Kapoor S, Crofford L.
A pilot study of a combined intervention for management of juvenile primary fibromyalgia symptoms in adolescents in an
inpatient psychiatric unit.
Int J Adolesc Med Health. 2011;23(3):193-7.

___ Yunus MB.
The prevalence of fibromyalgia in other chronic pain conditions.
Pain Res Treat. 2012;2012:584573.

___ Gracely RH, Ceko M, Bushnell MC.
Fibromyalgia and depression.
Pain Res Treat. 2012;2012:486590.

___ Alegre C, Barcelo M, Jardi R, Rodriguez-Frias F, Camprubi S.
alpha1-Antitrypsin in Fibromyalgia: Results of a randomized, placebo-controlled, double-blind and crossover pilot trial.
Musculoskeletal Care. 2011 Dec 22.

___ Kmietowicz Z.
Researchers get 1.6m pounds to look at scientific basis of chronic fatigue syndrome.
BMJ. 2011 Dec 21;343:d8281.

___ Tsibris AM.
The end of the association between XMRV, MLV-like viruses and chronic fatigue syndrome. #XMRV
Virulence. 2011 Nov 1;2(6):493-4.

___ Vicente-Herrero MT, Terradillos-Garcia MJ, Capdevila-Garcia LM, Ramirez-Iniguez de la Torre MV, Lopez-Gonzalez AA.
Fibromyalgia and laboral activities on the Spain legislation [Spanish].
Rev Med Inst Mex Seguro Soc. 2011 Sep-Oct;49(5):511-6.

___ Hadker N, Garg S, Chandran AB, Crean SM, McNett MM, Silverman SL.
Efficient practices associated with diagnosis, treatment and management of fibromyalgia among primary care physicians.
Pain Res Manag. 2011 Nov-Dec;16(6):440-4.

___ Goudsmit EM, Nijs J, Jason LA, Wallman KE.
Pacing as a strategy to improve energy management in myalgic encephalomyelitis/chronic fatigue syndrome: a consensus document.
Disabil Rehabil. 2011 Dec 19.

——–
(c) 2012 NCBI PubMed #Chronic Fatigue Syndrome #Fibromyalgia research #Fibromyalgia symptoms #vitamin D #female Fibromyalgia patients #XMRV #Milnacipran

New head of ME/CFS Research at NIH

Cinda Crawford — Mon, 23 Jan 2012 17:24:13 +0000

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

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

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

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

Please join me in welcoming Dr. Maier!

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

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

Cinda Crawford, your host

CFS: 2012 Updates

Cinda Crawford — Fri, 06 Jan 2012 14:15:28 +0000

To start the new year off right, here are some 2012 CFS updates. I hope they inform and help you in your efforts to decide what you want to to do to move forward with your illness. As more updates become available, I’ll surely will forward them on to you. *That’s one great reason to sign up NOW to receive the Health Matters Show RSS feed. (*Do so HERE and you’ll get notices in your in-box all year long! And/or sign up with i-Tunes to receive our Friday, weekly, downloadable podcast!)

It seems like there are almost always things happening in the world of Chronic Fatigue Syndrome or CFS. Even so, most people are looking for the wham-doozie news, the we-have-a-cure front-page, barn-burner notice or at least a we-know-the-cause headline! That’s not the case yet. Even so there are people writing and talking about this illness in major ways.

Listen to the podcast and then check out the links below. Keep abreast of the latest news if you can. 2012 might turn out to be a fantastic year!

Thank you, Cinda Crawford
Host of the Health Matters Show

(This podcast is 6 minutes 50 seconds long. Enjoy!)

Link 1: Letter from Llewellyn King

Post in Open Salon, ME/CFS: Into 2012 Without Cure or Cause

Link 2: Newsletter info from Dr. Charles Lapp

December 2011 Newsletter on the topic of a) New Research Opportunities, b) Pain Meds are a problem, c) Disposing of medications, d) Hunter Hopkins Facebook page, e) Ampligen Update and more!

Link3: The wisdom in and need for separating CFS from ME.

Worcester News Letters.

We would join the Worcestershire ME Support Group in welcoming the £1.6 million from the Medical Research Council (Sufferer welcomes ME research funds, Worcester News, 30 December 2011, if it were to be spent on biomedical research and for people with M.E. (Myalgic Encephalomyelitis). Sadly, neither is accurate.

Firstly, some of the projects, said to be, are not biomedical and are led by researchers who do not believe that M.E. is of physiological origin. Secondly, it is unlikely that any conclusions drawn from these studies could be applied to people with M.E. because, contrary to common assertion and repetition, M.E. is not the same as Chronic Fatigue Syndrome (CFS) and attempting to apply recommendations for treatment from a different set of people is mostly ineffective and can be potentially harmful for M.E. sufferers.

We shall make no progress until this wasteful expenditure on invalid and unreliable experimental design is no longer tolerated. Precious funding must first be allocated to separating M.E. as a discrete illness from the indiscriminate CFS bundle, as a proper foundation for any work that can be trusted.

Yours sincerely, drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith, ME Community Trust. org

~~~~~~~~~~

Thanks to Llewellyn King, Dr. Charles Lapp and Dr. John H. Greensmith for their input on this topic.

Please know that your comments are always very welcomed here at the Health Matters Show. Leave one today. Tell us if you like this kind of post, if you needed the info, if you’ve read it before and, especially, what you’d like to read about in the future.

XMRV and Contamination Link

Cinda Crawford — Mon, 28 Nov 2011 18:21:09 +0000

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

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

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

Contamination link

Contamination has been a constant theme in the research community over the past 9 months. Finding equal or more positive samples in the negative controls suggests contamination has occurred. In this study a genetic analysis of the positive samples indicated that it had occurred in the WPI. The analysis found that the XMRV the WPI picked up was almost identical to that produced by a lab cell line called 22RV1. This suggested the virus the WPI found had never entered a human body; ie was lab contaminant. (At the Ottawa conference Dr. Silverman, produced evidence of contamination in the original study, which resulted in several parts of the original Science paper being retracted, including the PCR results.)

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

Thanks, Cinda Crawford
Your host of the Health Matters Show

“I Am Thankful For…” by Cinda Crawford

Cinda Crawford — Fri, 25 Nov 2011 14:15:40 +0000

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

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

I’m thankful that I got ill.

“What?” you say. “Are you nuts?”

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

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

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

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

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

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

“That could be me.
I still…could feel that badly.
I could be that sick today if it weren’t for
The many blessings I have received.
I feel grateful.”

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

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

Letter from a Doctor

Cinda Crawford — Mon, 21 Nov 2011 14:38:28 +0000

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

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

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

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

Dear Ms. Pickett:

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

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

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

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

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

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

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

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

Sincerely,
Dr. Paul J. McLaughlin

Memory Problems: What impaired memory has to do with Fibromyalgia and CFS

Cinda Crawford — Fri, 11 Nov 2011 14:24:33 +0000

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

If you’re faced with a health challenge like Fibromyalgia or CFS, it’s not uncommon for your body to experience impaired memory functionality or cognitive dysfunction such as memory loss, jumbled memories, forgetting appointments, getting lost on familiar roadways or losing time.Having experienced an episode similar to that, a client recently shared with me her moments of horror… .

(Audio podcast is 8 minutes 45 seconds long)

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

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

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

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

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

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

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

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

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

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

CFS: An Autoimmune Illness in Disguise?

Cinda Crawford — Tue, 08 Nov 2011 15:16:52 +0000

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.

CFS may be an autoimmune illness!

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

Code ME and CFS Together? 9 Arguments Against

Cinda Crawford — Wed, 02 Nov 2011 18:25:46 +0000

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

An App for Healing Illness: Steve Jobs, Where Are You Now?

Cinda Crawford — Fri, 28 Oct 2011 14:20:04 +0000

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

Immune System Defects in CFS?

Cinda Crawford — Wed, 26 Oct 2011 13:15:13 +0000

Are there “Immune System Defects in CFS”? Yes. We patients knew that a person with Chronic Fatigue Syndrome (CFS) had them all along, but finally the scientists are proving this fact. Please read below as James Gallagher, health reporter for BBC News, reports “Chronic fatigue syndrome may be due to the immune system… .”

Researchers in Norway believe Chronic Fatigue Syndrome (CFS), also known as ME, may be caused by a wayward immune system attacking the body. The illness, the cause of which is uncertain and has no known cure, has attracted significant controversy.

A small study, reported in PLoS One, showed a cancer drug, which inhibited the immune system, relieved symptoms in some patients. The ME Association said the findings were “very encouraging news”.

Doctors in Norway stumbled across their first clue in 2004 when treating a patient with both Hodgkin’s lymphoma, a cancer of the white blood cells, and CFS.

When she received cancer treatment, her fatigue symptoms improved for five months.

DRAMATIC

The latest study, carried out at the Haukeland University Hospital in Bergen, built on the previous discovery by testing 30 patients with CFS.

Half were given two doses of Rituximab, a cancer drug which eliminates a type of white blood cell, while the other half were given a fake treatment.

In those patients receiving the drug, 67% reported an improvement in a score of their fatigue levels. Just 13% showed any improvement in the sham group.

Øystein Fluge, an oncology consultant at the hospital, told the BBC: “There was a varied response: none, moderate, dramatic relief of all symptoms. Two had no recurrence [of their symptoms], their life was turned completely around very dramatically.”

Find this CFS info and more at http://www.bbc.co.uk/news/health-15401746

Their theory is that a type of white blood cell, B lymphocytes, is producing an antibody which attacks the body.

The drug wipes out the lymphocytes which in some cases may “reset the immune system”, however, in other patients the fatigue symptoms would return when more B lymphocytes were made.

Mr Fluge said: “I think the fact that patients responded to treatment, improved cognitive function, fatigue and pain makes us believe we’re touching one of the central mechanisms.

“But we’re scratching at the surface, I would not characterise this as a major breakthrough.”

The researchers are now investigating the effect of giving more doses over a longer period of time.

If their hunch is right it will throw up more questions, such as what is the immune system actually attacking and whether or not an actual test for CFS/ME be developed.

Dr Charles Shepherd, the UK ME Association’s medical adviser, said: “The results of this clinical trial are very encouraging news for people with ME.

Firstly, they help to confirm that there is a significant abnormality in immune system function in this disease.

Secondly, they indicate that altering the immune system response in ME could be an effective form of treatment for at least a subset of patients.

We now need further clinical trials of such anti-cancer agents to see if other research groups can replicate these findings.

The disease is thought to affect some 250,000 people in the UK. (Extra: up to 1 million or more in the US.) Symptoms include extreme tiredness, problems with memory and concentration, sleep disturbances and mood swings. There is currently no accepted cure and no universally effective treatment The cause is not clear either, with many doctors thinking the term CFS/ME is being used for several different diseases. Some patients have sent death threats to researchers after disagreements over a cause or cure.

~~~

I, personally, am thankful for this research. With the work that I do helping people get well from Chronic Fatigue Syndrome, I find many indications that the immune system is not functioning properly. Finally…now, research tests are proving this dysfunctionality and the immune system defects in CFS.

Cinda Crawford, host of the Health Matters Show

Is it time for winter again?

Cinda Crawford — Fri, 21 Oct 2011 14:30:19 +0000

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

Good Results for CFS Treatment

Cinda Crawford — Thu, 20 Oct 2011 14:38:41 +0000

Today I relay information of good results of a CFS (Chronic Fatigue Syndrome) treatment. That makes me happy! Two oncologists in the city of Bergen in Norway have recently discovered a possible treatment for this horrible illness.

The drug that they administered improved the condition of two out of three of the patients treated. Several patients were healed. The breakthrough, published today in the medical journal PLOS one, can provide answers to CFS patients concerning what causes the mysterious disease and how it can be treated.

We definitely see an effect. There is hope,” states professor and head of oncology at Haukeland University Hospital, Olav Mella to the TV 2 News.

TV 2 has exclusive access to the research paper that came out in the medical journal PLOS one. Mella and his colleague, attending MD Øystein Fluge, have completed a double-blind study on 30 Norwegian CFS patients.

The results are sensational. As stated, two out of three of the patients experienced major improvement, while some experienced a full recovery.

*This information courtesy of Daniel Moricoli and Co-Cure.org.

CFS Knowledge Center
CFS Community
Pocket Money Fund
“Practical Information, Community & Research Support for those afflicted with ME/CFS”

Thanks so much and please leave a comment here at the Health Matters Show,
Cinda Crawford

An Argument Against ME/CFS

Cinda Crawford — Fri, 14 Oct 2011 14:30:47 +0000

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

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

(9 minute 41 second podcast)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Per: Jill McLaughlin

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

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

Let’s make a point of getting this right!

Cinda Crawford, host of the Health Matters Show

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

Health Matters Show: Summarizing ME/CFS Information by a Doctor

Cinda Crawford — Fri, 07 Oct 2011 18:38:08 +0000

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