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
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___ 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

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

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

Thanks so much, Cinda Crawford (info below)

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

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

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

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

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

Today’s audio podcast is 5 minutes and 20 seconds

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

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

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

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

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

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

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

Thanks, Cinda Crawford
Your host of the Health Matters Show

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

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

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

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

Thanks, Cinda Crawford
Your host of the Health Matters Show

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

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

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

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

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

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

Thanks, Cinda Crawford

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.

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

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

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

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

(9 minute 41 second podcast)

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Per: Jill McLaughlin

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

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

Let’s make a point of getting this right!

Cinda Crawford, host of the Health Matters Show

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

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

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

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

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

(8 minutes 54 second podcast)

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

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

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

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

Cinda Crawford, your host

Many people with Fibromyalgia and Chronic Fatigue Syndrome believe that their cortisol level and stress response system in the body is altered. The following study below talks of this abnormal hypothalamus- pituitary- adrenal (HPA) axis response and can pinpoint problems.

Cinda Crawford, Health Matters Show (*see study summary below)

Nat Rev Endocrinol. 2011 Sep 27. doi: 10.1038/nrendo.2011.153. [Epub ahead of print]

Hypothalamic-pituitary-adrenal axis dysfunction in chronic fatigue syndrome.

Papadopoulos AS, Cleare AJ. Department of Psychological Medicine, Institute of Psychiatry, Box P074, 103 Denmark Hill, London SE5 8AZ, UK.

Abstract
The weight of current evidence supports the presence of the following factors related to hypothalamic-pituitary-adrenal (HPA) axis dysfunction in patients with chronic fatigue syndrome (CFS): mild hypocortisolism (adrenal insufficiency); attenuated diurnal variation of cortisol; enhanced negative feedback to the HPA axis; and blunted HPA axis responsiveness.

Furthermore, HPA axis changes seem clinically relevant, as they are associated with worse symptoms and/or disability and with poorer outcomes to standard treatments for CFS.

Regarding etiology, women with CFS are more likely to have reduced cortisol levels. Studies published in the past 8 years provide further support for a multifactorial model in which several factors interact to moderate HPA axis changes. In particular, low activity levels, depression and early-life stress appear to reduce cortisol levels, whereas the use of psychotropic medication can increase cortisol. Addressing these factors-for example, with cognitive behavioral therapy-can increase cortisol levels and is probably the first-line approach for correcting HPA axis dysfunction at present, as steroid replacement is not recommended.

Given what is now a fairly consistent pattern of findings for the type of HPA axis changes found in CFS, we recommend that future work focuses on improving our understanding of the cause and relevance of these observed changes.

PMID: 21946893 [PubMed - as supplied by publisher]

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?

In the last few days, Fibromyalgia has been in the news about: 1) a general discussion of problems and issues, 2) that yoga exercises may be able to help people with the symptoms of Fibro, 3) that acupuncture treatments may be of benefit and help provide pain relief and finally, 4) that low doses of the muscle relaxer cyclobenzaprine may help you sleep better and feel less pain. I’m sure there are even more articles, reports and blogs I could feature to update you.

The point is things are happening. If you feel like nothing changes, you’re not keeping your eyes open and your ears alert for news about Fibromyalgia. It is available.

Here at the Health Matters Show, I’m always anxious to keep you informed about the issues that can help you manage and improve your life, but in the end, much of this is up to you. Yes, read, research and learn more about what is out there in the world, but in the end, the decision of “what” or “who” is going to help you really get well is yours. In today’s audio podcast file, I talk a lot about these important issues. *Check below to the access the news about Fibromyalgia that I mentioned!

(Today’s podcast file is 5 minutes 14 seconds. Feel free to download and listen to it at your leisure!)

Muscle Relaxer: in new research released this week, TONIX Pharmaceuticals has shared news that the very first drug being developed for night time usage in the treatment of Fibromyalgia syndrome (FM), named cyclobenzaprine (CBP), is working on improving the condition’s core symptoms.

Acupuncture…is most often used for postsurgical or chemotherapy-related nausea, pain management, Fibromyalgia, irritable bowel syndrome, stroke rehabilitation, sports injuries, mood disorders, chronic fatigue, insomnia, stress management, migraines, tension headaches, anxiety, tinnitus, infertility, and menstrual irregularities.

Yoga: Gina Bartiromo, who had a brain injury after slipping and falling about 150 feet down the east face of Yosemite’s Half Dome in 2009, will lead a chair yoga class Thursdays in November at the Camarillo Health Care District.

“It’s for people with any sort of physical ailment, such as fibromyalgia or arthritis, or for people who have physical limitations from an injury and can’t get down on a mat,” said Bartiromo, of Camarillo. “It has all the benefits of yoga — strengthening, stretching, tuning in to the body.”

Thanks so much for joining me at the Health Matters Show today. If you suffer with Fibromyalgia, there are really great things and ideas to investigate like a new muscle relaxer, yoga or acupuncture. Some based in the western medical world; others originating from eastern-based cultures. I encourage you to consider them all as you decide what is best for you.

Thanks so much,
Cinda Crawford, your host
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!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Kevin Short, July 2011.

contact@angliameaction.org.uk

This text is available online as a PDF document .

Permission to repost]

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

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

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

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

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

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

[8] Carruthers et al op. Cit

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

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

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

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

[12] Carruthers et al op. Cit.

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.
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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?