From Lotus Guide: Directory for Healthy Living

For many diseases in our world, we are finally learning the treatments using only allopathic or only homeopathic remedies are seldom the best approach in and of themselves. Much of the confusion has come from the polarized arguments of both sides attempting to defend their points of view, but like most truths the answers are often found in the middle ground, hence “integrative medicine.” I found this book, at 448 pages, to be very comprehensive and I highly recommend it for anyone searching for a balanced approach for the treatment of these diseases.

~Dhara Lemos, Lotus Guide


More about the book can be found here. 

Available at:

Inner Traditions, Bear and Company, (Publisher, imprint Healing Arts Press) here.

Amazon.com, here.
Kindle, here.

Barnes and Noble, here.
Nook Book, here.

Booktopia, here.

Google Books, here.

Simon and Schuster, here.

Amazon UK, here.

Amazon Canada, here.

Amazon India (free shipping), here.

Australian Amazon Associate (note: you will need to type in the book title), here.

Alibris Books, here.

ebay, here.

Abe Books, here.

Kobo ebooks, here.

~ • ~ • ~ • ~ • ~ • ~

Celeste Cooper is a retired RN, educator, fibromyalgia patient, and lead author of the Broken Body Wounded Spirit: Balancing the See Saw of Chronic Pain devotional series (coauthor, Jeff Miller PhD), and Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection (coauthor, Jeff Miller PhD) She is a fibromyalgia expert for Dr. Oz, et al., at Sharecare.com, here, and she advocates for all chronic pain patients as a participant in the Pain Action Alliance to Implement a National Strategy, here. You can read more educational information and about her books on her website, http://TheseThree.com

Understading Migraine and the Role of Myofascial Trigger Points

Migraine headaches co-exist in both fibromyalgia (FM) and chronic fatigue syndrome (CFID), and can be a great factor in decreasing our pain threshold. It is like every nerve ending we have is fresh, raw and exposed. One more insult has us ready to explode.

Though we still don’t know for sure what causes migraine, we are learning. Cervicogenic migraine is a migraine attack that is perpetuated or preceded by neck pain.  For me, and I suspect many others, I can feel the golf ball starting to form on the right side of my neck at the base of my skull, and I can feel little pea size or smaller trigger points even up my scalp. (I do have significant cervical disease, but this is different, it is myofascial, in the muscle). Before long, a whole cascade of events begins and the once latent trigger points (those that can be felt but aren’t painful until pressure is applied) in my face develop into full blown active TrPs, ones that hurt and radiate pain seemingly without warning without even touching them. I can feel them with my fingers and when I apply pressure, this helps if I can get them to release. If treatment is successful, you can feel them release under your finger, and sometime can feel the tell tale local twitch response. Treating all of these TrPs can help with the attack. It is when I neglect treating them before this point that I am more likely to have this migraine, and the greater the neglect, usually the more intense the headache.

Research now indicates that tension type headaches can certainly be the result of myofascial trigger points.

A myofascial trigger point (TrP) is a self-sustaining, irritable area in the
muscle that can be felt as a nodule in a taut band. This irritated spot causes
the muscle to gradually shorten, interfering with the motion function of the
muscle and causing weakness and pain.” (Book excerpt)

Migraines alter my life, my ability to think rationally, and breakdown my defenses. My migraines always start behind my right eye, whether they start from weather changes, an oops with my diet, stress, or my myofascial TrP disease (which scientists now believe all fibromyalgia patients may have in addition to the body-wide centrally mediated tenderness) they are still intense. Usually, when my migraines switch to the left, I know it is on its way out. Rarely, but when the attack begins on the left, it isn’t as severe, nor does it last as long. Most of my refractory migraines are cervicogenic in nature, and I believe that is because of the number of neglected trigger points and the connection with fibromyalgia. This peripheral pain impulse to my brain, keeps it in perpetual wind-up, not allowing it to function as it should to send out natural endorphins and chemicals to counteract the original upset.

Migraine perpetuators related to myofascial trigger points

Bruxism is a fancy term for grinding teeth. This condition can aggravate facial trigger points, interfere with restorative sleep, cause teeth erosion, and, among other things, contribute to migraines. If you catch yourself grinding your teeth during the day, you most likely grind at night too, and according to my dentist, bruxism in sleep is four times more forceful. Is it any wonder that myofascial trigger points develop? Assistive devices, such as a nighttime mouth guard, can inhibit some of the pain associated with the disorder. Proper alignment, may abate the development of TMJ/TMD, but the force of bruxism can be a great contributor to the development and recurrence of TrPs in the face and jaw.

Temporomandibular dysfunction (TMD/TMJ), occurs when your chewing muscles are uncoordinated. This puts apposing muscles under undue stress and increases the occurrence of myofascial TrPs. Temporomandibular dysfunction is often associated with chronic muscular headaches and craniofacial pain. Pain can also extend to the ears, neck, and shoulders. Some people experience clicking and grinding noises during movement of the jaw, this limitation could be related to untreated or undertreated myofascial trigger points and pain that occurs anywhere there is muscle, including inside the mouth.

Poor posture and injury can also aggravate the neck and surrounding/supporting muscles, and trigger points in the neck can refer pain to the head and other places. (There are other topics here on my blog that explain how trigger points develop and cause pain and dysfunction).

Skeletal anomalies as the result of injury, surgery, spinal degeneration, or birth defect can put strain on opposing muscles and increase incidence of myofascial trigger points.

Treatment

First find the TrP in the taut band of muscle. It may not be easy to do initially, it takes practice. If you can find a good myofascial therapist to help you, such as a chiropractor or physical therapist that does active release therapy (ART), http://www.activerelease.com/ or a myofascial trigger point therapist, http://www.myofascialtherapy.org/ to help you, and self treatment in between, you may be able to lessen your headache frequency or intensity if they are cervicogenic. With a myofascial tool or your fingers apply pressure and back off to about 70-80%, hold the pressure for about 30-60 seconds. You may feel the TrP release. Some are very resistant and may take several treatments. Also remember that the TrP you are treating may NOT be the primary TrP causing the development of a secondary or satellite TrP. I hope you will pick up a good book on self treatment of myofascial trigger points. My favorite is Clair Davies (Books are listed below).


Helpful links for understanding migraine
The American Headache Society
The International Headache Soceity

Other research:

Gerwin RD. Fibromyalgia Tender Points at Examination Sites Specified by the American College of Rheumatology Criteria Are Almost Universally Myofascial Trigger Points. Curr Pain Headache Rep. 2010 Oct 27. [Epub ahead of print]
Department of Neurology, Johns Hopkins University, Baltimore, MD, 21287, USA

Ge HY. Prevalence of myofascial trigger points in fibromyalgia: the overlap of two common problems. Curr Pain Headache Rep. 2010 Oct;14(5):339-45. Laboratory for Musculoskeletal Pain and Motor Control, Center for Sensory-Motor Interaction (SMI), Department of Health Science and Technology, Aalborg University, Fredrik Bajersvej 7-D3, Aalborg, DK-9220, Denmark.

Saracco MG, Valfrè W, Cavallini M, Aguggia M. Greater occipital nerve block in chronic migraine. Neurol Sci. 2010 Jun;31 Suppl 1:S179-80.
Neurological Department, ASL AT-Asti, Ospedale Cardinal Massaia, Via Conte Verde 125, Asti, Italy

Delstanche S, Schoenen J. Botulinum toxin for the treatment of headache: a promising path on a "dead end road"? Acta Neurol Belg. 2010 Sep;110(3):221-9.
Headache Research Unit, Department of Neurology and GIGA-Neurosciences, Liège University.

(Signature line appended June 2018)

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

~ • ~ • ~ • ~ • ~ • ~

Learn more about Celeste’s books here. Subscribe to posts by using the information in the upper right hand corner or use the share buttons to share with others. 

A better understanding of Piriformis Syndrome.

Book Excerpt (copyrighted)

Trigger points can mimic every symptom of degenerative disc disease. If your physician has ruled out degenerative disc disease, or you do not respond to the usual treatments for the disease, please consider the presence of untreated TrPs. Trigger points occurring in muscles—intervertebrals; quadratus lumborum; piriformis; or gluteus maximus, medius, and minimus—could be the culprit. © (Cooper and Miller, pg. 87)

The piriformis is a very small, deep muscle that extends from the side of the sacrum (lowest backbone, tailbone) to the top of the thighbone at the hip joint, passing over the sciatic nerve. When a short or tight piriformis is stretched, it can compress and irritate the sciatic nerve causing the pain of sciatica. Referred pain from the piriformis is felt in the sacrum, buttocks, and hip. A tight piriformis muscle can also put pressure on the pudendal nerve and cause pain in the groin, genitals, or rectum. In severe cases, piriformis syndrome could be responsible for buttock atrophy. The pain can cause altered gait and guarding, which can cause development of secondary musculoskeletal difficulties. Treatment of piriformis syndrome calls for releasing the entrapped sciatic nerve. I have found myofascial release and specific TrP treatments to be beneficial.(c) (Cooper and Miller, pg 103-104.)

Devin Starlanyl,  show cases 2010 research:

Aydemir K, Duman I, Tugcu I et al. 2010. Piriformis syndrome presenting with foot drop diagnosed with magnetic resonance imaging: a case report. J Musculoskel Pain. 18(3).261-264. Abstact at:
http://www.ingentaconnect.com/content/apl/mup/2010/00000018/00000003/art00009?crawler=true

Comments from my mentor, friend and pioneer in understanding FM and the role of myofascial trigger points Devin Starlanyl.

“Piriformis syndrome can cause foot drop. Magnetic resonance imaging can help earlier diagnosis and treatment.” Piriformis syndrome is a description, not a diagnoses. The authors did not note that myofascial TrPs are the most common cause of this condition, and can cause foot drop as noted in Travell and Simons Myofascial Pain and Dysfunction: The Trigger Point Manual, Vol II. Trigger points were not mentioned, although the authors noted the palpable mass that responded to steroid injection into the mass, resulting in resolution of the syndrome. It would have been interesting to see if the “mass” responded to TrP injection of local anesthetic. Steroids are undesirable and unhelpful in most TrP injections. DJS

I hope you found this information helpful.

Harmony and Hope, Celeste


Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection by Celeste Cooper and Jeff Miller, Vermont: Healing Arts Press, 2010.

Fibromyalgia & Chronic Myofascial Pain: A Survival Manual, 2nd ed., by Devin J. Starlanyl, M.D., and Mary Ellen Copeland, M.S., M.A. Oakland, Calif.: New
Harbinger Publications, Inc., 2001.

Myofascial Pain and Dysfunction: The Trigger Point Manual by David Simons, Janet Travell, and Lois Simons, 2nd ed. Philadelphia: Lippincott Williams and Wilkins,
1999.

January - A good time to organize your medical records

As we begin the new year, and with nearly all doctors being digital ready, the time is right for organizing your medical records.

A good physician will appreciate your involvement and by being organized you can save them time, and relate your symptoms more readily and effectively, making your visits more productive. Our publisher has been so kind to allow you to photocopy the useful tools to document your symptoms, needs, and track progress and setback, hopefully identifying measures that either help or hinder your pain and fatigue.

Please pay particular attention to the Useful Tools and the end of each chapter in the book's contents. Each chapter builds on the previous so you can gather information as you go. Harmony and Hope, Celeste.

Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection

Contents
Foreword by Devin J. Starlanyl ix
Preface xi
Introduction 1

1 Fibromyalgia Pain, Chronic Fatigue Immunodysf unction, and Chronic
Myofascial Pain from Trigger Points 3

All about Fibromyalgia 5
Summary Exercise: FM 2Chronic Fatigue Immunodysfunction—The Muster to Master 27
Summary Exercise: CFID 38
Chronic Myofascial Pain—Nerve to Muscle 40
Summary Exercise: CMP 56

Chapter Summary:
FM/CMP–FM/CFID—Is It a Double Cross? 58
Glossary of Terms Introduced in Chapter 1 that Describe Pain 63

2 Communicating Your Health Care Needs 65

Relating Your Symptoms and Health History 66
Identifying Aggravating and Alleviating Factors 73
Coexisting Conditions 75
Communicating with Your Physician and Other Health Care Providers 113

Summary Exercise: Clear Expressions 122

Useful Tools for Communicating with Health Care Providers 126
Medication Log 127
Symptom Inventory Sheet 128
Anatomical Diagram of Pain 130
Health History Log 131

3 Dialogues Within and Without 132

Journal Writing: An Internal Dialogue 133
Soliciting the Support You Need 140
Sample Letter Soliciting Support 144
Relationships: Having Them, Keeping Them, and Knowing
When to Let Them Go 146
Advocacy—A Constructive Way to Vent 151

Summary Exercise: Reaction to Interaction 153

Useful Tools for Inner and Outer Self-expression 156
A Baker’s Dozen: Thirteen Tips for Expressing Your Feelings
through Poetry 157
Interactive Pain/Energy Meter 159
It Takes Two to Tango: Rules for Possibly the Most Important Date in
Your Relationship 160
Sample Advocacy Letter 161

4 My Body Is Matter and It Matters 162

Understanding and Treating Pain 163
Managing Your Diet 190
Exercise—Use It or Lose It 198
Bodywork—Toiling over the Anatomy 213
Medical Specialists and Therapists 219
Health and Functionality Therapists 223
Chapter Conclusion 236

Summary Exercise: Exercising Your Options 237

Useful Tools for a Healthy Lifestyle 240
Diet Assessment Guide 241
Stretches for Every Part of Your Body 243

5 The Power of Mind, Body, and Spirit 252

Depression—Overcoming the Doldrums 253
Spirituality 265
Accepting What Is 271
Other Paths 277

Chapter Conclusion 287

Summary Exercise: Expanding Your Options 289

Useful Tools for Connecting with Your Spiritual Center 291
Breathing Meditation for People with FM, CFID, and CMP 292
Guided Meditation for Healing 292
New Thoughts on Insomnia 293

6 Dealing with Circuit Overload 294

Brain Fog—Symptoms of Blowout before a Power Failure 295
Time Management—An Exercise in Energy Conservation 302
Crisis Management—Dealing with Major Life Events 307

Chapter Conclusion 309

Summary Exercise: Unloading the Gray Matter 309

7 Approaching the System Systematically 312

The ADA and the EEOC 312
Social Security Disability Determination 318
Patient Rights 336
Miscellaneous Programs and Help 344
Confidentiality and HIPAA 352

Chapter Conclusion 356

Useful Tools for Navigating the Health Care System 357
Interaction Worksheet for Important Calls and Meetings 358
Treating Health Care Provider Log 359
Chronological Health Record 360
Table for Determining Disability Status for Those Limited to
Sedentary Work 361
Table for Determining Disability Status for Those Capable of Light
Physical Work 364

Epilogue 366

Resources for Maximizing Health Care, Relationships, and
Emotional Well-being 369
Glossary of Acronyms 391
Notes 395
Index 424

SIBO, Yeast & Leaky Gut and YOU!

SIBO is an acronym for small intestinal bacterial overgrowth, sometimes also referred to as SBBO, small bowel bacterial overgrowth. The small bowel is about 20 feet long, connects the stomach to the colon (large bowel/intestine) and is responsible for secreting a hormone (secretin) that stimulates the pancreas to produce digestive enzymes. Digestion fulfills the bowel’s purpose, breaking down food into nutrients and eliminating waste or unwanted products

The small bowel has fewer bacteria than the large bowel, but none the less, it has bacteria that should be there. However, when these bacteria have outlived their stay/purpose, the bacteria become unfriendly, rather like fermenting.

SIBO can result from such things as a partial bowel obstruction, adhesions, bowel disease, such as diverticulosis or other anatomical malformations, slow motility either from medications or damage to the intestinal nerve endings from disease. This causes the symptoms that are often confused with irritable bowel syndrome. Certainly people with IBS can also have SIBO, and it seems may be at a higher risk, therefore, SIBO should be considered in FM and CFID (ME/CFS) patients with IBS. Failure to treat SIBO can cause long term problems.

It is diagnosed by a hydrogen breath test and other more invasive techniques and there are antibiotics specific to the GI tract, which might decrease the chance for yeast which can also overgrow in the bowel.

*The following is an excerpt from the book and is protected under copyright laws. Helpful links have been inserted into the material to provide more information.

Candidiasis © Yeast
Intestinal yeast has been linked to small bowel bacterial overgrowth (SIBO) causing excessive gas, bloating, abdominal pain, and altered bowel habits.(1)

Yeast infections can occur with FM and overgrowth may increase the symptoms of bloating, brain fog, abdominal complaints, and muscle aches associated with FM and CMP. It can also exacerbate the usual symptoms of FM and CMP.(2) It has been identified as a possible trigger to CFID, and some association has been made with chronic candidiasis syndrome.(3) Yeast infections should always be treated, but you can also exercise preventive lifestyle choices.

To help prevent vaginal yeast, avoid vaginal douching, keep the area dry, and use a blow dryer after showering. Wear 100 percent cotton underwear dried on high heat, and avoid nylon panty hose. If you are a carbo junkie, change your diet. There are other reasons for this that will be discussed later, but understand that excessive sugar and carbohydrate intake have been linked to a higher risk of developing yeast overgrowth. Insulin resistance and some medications may perpetuate yeast or leaky gut. (4)

[Leaky Gut, LGS, causes body-wide symptoms because of holes in the intestinal barrier. Due to this breakdown, the bowel does not function normally and does not filter out some harmful substances, such as bacteria, toxic waste products, food additives, infectious agents, and inflammatory substances…. with this disruption to normal bowel function, the immune system leaves the gut open to infections and yeast overgrowth, causing not only gastrointestinal symptoms like bloating, gas, diarrhea, and abdominal pain, but other feelings of ill health as well. Cooper & Miller, pg 97-98]

Antibiotic use should be avoided when possible, as antibiotics are indiscriminate and kill off our “protective” flora along with offending microorganisms. Of course, there are times when their use is needed. Just be aware that when you must take antibiotics, candidiasis may occur and need to be treated. Talk to your doctors if you are prone to yeast infection with antibiotic use, so that you can get appropriate treatment. There are specific tests to check for candidiasis-initiated responses by the body, called IgG, IgA, and IgM antibodies.(5)

(end of excerpts)

In the case of SIBO, antibiotics are necessary because of the “bacterial” Depending on the underlying factors for overgrowth, some patients will have to be on antibiotics long term,. In this case there may be rest periods between antibiotic therapies.

I personally have had good results with Xifaxan, but that doesn’t mean everyone will. It depends on the bacteria and follow up is suggested. Probiotics such as lactobacilli and bifidobacteria are suggested for all conditions. It is believed they may inhibit the development of bad bacteria and boost immunity.

If you have these symptoms, I hope you will approach your gastroenterologist (GI doctor). This condition is quite painful and when coupled with irritable bowel syndrome the pain, loss of sleep and comorbid symptoms can be overwhelming. If SIBO or Leaky Gut are at the root of your disorder, you may find treatment that minimizes your symptoms and increases your quality of life

In healing,

Celeste Cooper, RN / Author, Freelancer, Advocate

Think adversity?-See opportunity!

http://www.CelesteCooper.com

Resources:

(1) GI Problems—Is Bacteria to Blame? Fibromyalgia Network Newsletter (July
2000): 3.

(2) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual, 48.

(3) R. E. Cater, 2nd, “Chronic intestinal candidiasis as a possible etiological factor in the chronic fatigue syndrome,” Medical Hypotheses 44, no. 6 (June 1995):
507–15.

(4) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain: A Survival
Manual, 296.

(5) Cooper & Miller. Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection. 83.

Correspondence NIAMS (NIH)-Diagnostic Criteria for Fibromyalgia

I have received a reply from the National Institute of Health NIAMS to my original letter of
October 26, 2010 regarding inclusion of the assessment of myofascial trigger points and restless leg syndrome in the proposed diagnostic criteria for fibromyalgia. My original letter can be here.

I thought you would be interested in what they had to say, and what I have to say in my reply to Mr. Clark, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), Public Liason.

Mr. Clark’s letter is following my reply. Harmony and Hope, Celeste

December 8, 2010

Dear Mr. Clark

Thank you for your response.

While I understand the role of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), I believe it is important that the researchers you support have a concise tool and method for understanding the diagnosis of fibromyalgia (FM). The tender point model evolved as a diagnostic tool, but was developed to screen FM research participants. The diagnostics for fibromyalgia should not be separated from the research. When investigators do not have a consistent diagnosis method, the science becomes seriously compromised. Therefore, the proposed diagnostic criteria for FM are important to research funded and supported by the NIAMS, National Institute of Health (NIH) and any other entity interested in investigating the causes and treatments for FM.

We look forward to further research on the relationship of peripheral pain generation by MTrPs and wind-up in the FM brain. As I stated previously, the literature shows us not all people with MTrPs have centralization. We need to understand why this phenomenon occurs in FM, as well as, phenomena such as RLS, which we now know is ten times more likely to occur in FM. Restless leg syndrome could explain, at least in part, dysfunctional sleep (1), but understanding the orchestration of the brain in any disease process is complicated. Since learning more about these two occurrences, ignoring the importance of a physical exam in diagnosing FM will lead us, the patient, researchers and clinicians, down another twenty years of unsuccessful outcome. As Dr. Bennett has said, it is like “throwing the baby out with the bathwater.” (2) Restless leg syndrome could also have a myofascial component with centralization, but how would we know without a physical assessment by someone educated to do so?

Dr. Siddhartha Sikdar’s research on ultrasound imaging sounds exciting, but unless the diagnostic criterion for fibromyalgia includes assessment of myofascial trigger points (MTrPs), it is meaningless to at least a subgroup and possibly all fibromyalgia patients. (3) I assume his research is ongoing, as I was not able to find an abstract on Pub Med and I was unable to navigate the link provided, but I am interested in reviewing this research. To be able to document MTrPs with ultrasonography is a step in the right direction, resulting in better treatment. As it stands now, few are willing to do TrP injections on myofascial trigger points in the scalenes because of their proximity to major vasculature and the lung apex. This leaves us untreated or undertreated. As you know the MTrPs in the scalenes (along with other muscles of the head and neck) perpetuate migraine headaches (4), a frequent co-morbid condition in FM.

As a past nurse educator who wrote continuing education programs for the Missouri State Board of Nursing, I am happy to see the NIH has developed a tool, PROMIS, for measuring outcomes. (Please take this as constructive, as that is how it is intended, there is a typo regarding the anti-diarrheal for treatment of IBS. It should read Lomotil.) The NIH site has useful information, but does not reflect the new research (citation in my original letter on the prevalence of MTrPs in FM). Weight bearing exercises can active latent TrPs. Some patients, me included, cannot aggressively increase exercise without a horrible outcome. (I was once a downhill skier, water skier, racquetball instructor, hiker, competitive roller skater, and league golfer, I WANT to exercise, and I am certainly not alone). When a patient is told to kick it up a notch and their pain is increased significantly (in many cases activating numerous MTrPs in multiple muscles, in multiple layers), causing greater dysfunction, they will avoid it all together, this is NOT what we want. Patients need an exercise that is right for them, so they will be compliant. I am glad to see that changing daily behaviors to incorporate incidental movement is considered, however, recognition of and understanding of MTrPs and exercise is paramount in treating the FM patient.

The HPA axis is dysfunctional in FM, and therefore makes it difficult to diagnose conditions such as Hashimoto’s, hypothyroid or thyroid resistance which rely on a normal orchestration between the pituitary and thyroid. Metabolic disturbances can cause mental fog, lethargy, weight gain, and may exacerbate MTrPs and make them harder to treat. (5) Yes, many things must be considered. All of this is discussed in our book with appropriate references. I would be happy to have my publisher, Healing Arts Press, send you a copy for review.

The drugs you suggest were not developed for FM specifically. They are drugs that have been tweaked or remarketed by pharmaceutical companies with little effort on research. They are helpful for a few, but not all, and we need more square one research on medications and assessment of those currently being used. I understand the need for a benchmark, but I want to see the research move forward. Classes of medications approved for FM (keep in mind that these medications were prescribed off label for years, without the benefit of a formal study and protection for the study participants), have the potential to interact with medications used to treat the co-morbid conditions. Frequently these medications are given in samples and are not logged at a patient’s pharmacy. As a nurse, this is of great concern.

The primer for FM research should include an extensive literature and research review. Let’s support research into the cause of development of MTrPs in fibromyalgia, their relationship to each other, centralization, co-morbid conditions such as periodic limb movement, restless leg syndrome, disrupted sleep cycles, irritable bladder syndrome, irritable bladder, bruxism, temporomandibular dysfunction, dysmenorrhea, impotence (yes, men should be included in all FM studies, this is NOT a disorder specific to women), et al.

Physical, mental, emotional and spiritual balance is necessary for coping with chronic pain and fatigue; however, fibromyalgia is NOT a somatoform disorder, and we are not at any greater risk than any other chronic disease patient. Meditation, deep breathing, T’ai Chi, stretching, (all methods that we highly support and suggest in our book), and medications will promote muscle relaxation, however the ONLY treatment for MTrPs presently known is direct manipulation. Pain perception and development of healthy coping strategies are paramount in wellness for ALL people. Let’s use the research money effectively.

I am excited to see the research going on at NIAMS, especially the TMS, (which I would like to know more about) but one day I hope to open the link on FM at the NIAMS website and see assessment of myofascial trigger points, and therapies to treat them, and a suggestion that all FM patients have sleep studies.

Thank you for your time, your consideration and your efforts at educating, “improving patient outcome, one step at a time.”

Sincerely,

Celeste Cooper, RN author


(1) Viola-Saltzman M, et al "High prevalence of restless legs syndrome among patients with fibromyalgia: A controlled cross-sectional study" J Clin Sleep Med 2010; 6: 423-427
(2) “Drs Bennett & Clauw Debate Abandonment of Tender Point Test in Revised FM Diagnostic Criteria.” FM Aware, Fall issue.
(3) Rehabilitation Medicine Department, National Institutes of Health Clinical Center, Bethesda,MD. Project: Imaging Myofascial Trigger Points, 2008-present. Collaborators: Jay Shah MD.  accessed December 5, 2010).
(4) Myofascial Pain and Dysfunction: The Trigger Point Manual by David Simons, Janet Travell, and Lois Simons, 2nd ed. Philadelphia: Lippincott Williams and Wilkins, 1999. Vol 1, pg 241.
(5) Starlanyl and Copeland, Fibromyalgia & Chronic Myofascial Pain Syndrome: A
Survival Manual, 44.


CC:
The American College of Rheumatology, % Amy Miller
Robert Bennett, MD, FRCP (University of Oregon)
Brad Ellis, Liaison, The American Pain Foundation
Shari Ferbert, Advocates for Fibromyalgia Funding, Treatment, Education, & Research
Alan Alan Gurwitt, President Massachusetts CFMDS/ME & FM
Jeff Miller, PhD, author
Rocky Mountain CFS/ME & FM Association Attn: Tim
Marly Silverman, Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc
Devin Starlanyl, author, researcher
Kristin Thorson, American Fibromyalgia Syndrome Assoc


Dear Ms. Cooper:

Your email inquiry was forwarded to the Office of Communications and Public Liaison of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) for a response. The NIAMS, a part of the U.S. Department of Health and Human Services’ National Institutes of Health (NIH), supports medical research into the causes, treatment, and prevention of diseases of the bones, joints, muscles, and skin.

Thank you for copying the NIAMS in your letter and sharing with the Institute your concern about the proposed diagnostic criteria for fibromyalgia. Please note that the NIAMS is not an author or sponsor of these diagnostic guidelines, as that is not within our mission. Our mission is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases; the training of basic and clinical scientists to carry out this research; and the dissemination of information on research progress in these diseases. It is not the intention of the NIAMS to provide clinical diagnoses or recommend any particular treatment or service, but rather to provide information to better understand health conditions that are encompassed by the Institute.

The NIAMS sponsors research that will improve scientists’ understanding of the specific problems that cause or accompany fibromyalgia, in turn helping them develop better ways to diagnose, treat, and prevent this syndrome. This research covers a broad spectrum, ranging from basic laboratory research to studies of medications and interventions designed to encourage behaviors that reduce pain and change behaviors that worsen or perpetuate pain.

You may be interested in a study in myofascial trigger points (MTrPs) currently being funded by the NIAMS. The principal investigator is Dr. Siddhartha Sikdar at George Mason University. This research group has developed new ultrasound imaging methods to visualize and characterize the physiology and physical properties of the MTrPs and their surrounding soft tissue. Their research goal is to use this technology, along with other innovative approaches, to achieve a more comprehensive understanding of the abnormalities associated with MTrPs. If you would like to learn about other research that the NIAMS and the NIH are supporting, you can access the NIH RePORTER database at: http://projectreporter.nih.gov/reporter.cfm.

Another NIH project that may be of interest you is the Patient-Reported Outcomes Measurement Information System (PROMIS), an initiative that is researching and developing new ways to measure patient-reported outcomes (PROs), such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases. The goal of this initiative is to improve the reporting and quantification of changes in PROs. The NIAMS supports an effort to develop PROMIS specifically for use in patients with fibromyalgia. You can read more about how researchers are learning about fibromyalgia in our booklet, “Questions and Answers About Fibromyalgia,” which can be viewed online at http://www.niams.nih.gov/Health_Info/Fibromyalgia/default.asp.

The NIAMS Information Clearinghouse serves the community by producing and distributing health information brochures free to the public and referring requestors to outside voluntary and professional organizations. For more information please visit the following link on our Web site at http://www.niams.nih.gov/About_Us/Mission_and_Purpose/Community_Outreach/default.asp. Our online catalog of free publications can be found at http://catalog.niams.nih.gov/; these materials are updated regularly to keep current with the latest research.

I hope this information is helpful.

Respectfully,


Richard W. Clark
NIAMS Office of Communications and Public Liaison
31 Center Drive, MSC 2350
Building 31, Room 4C02

Read the panned response from Mr. Rice, UK Department of Health.

Those of us involved in the letter writing campaign for worldwide ME/CFS received the same response. Of course, they will not admit to getting caught with their hand in the cookie jar. According to those in a better position than I, these responses are unfounded and untruthful. If you have had your finger on the pulse of XMRV, you will be outraged.


December 3, 2010

Our ref: DE00000566856

Dear Ms Cooper,

Thank you for your email of 9 November to Andrew Lansley about xenotropic murine leukaemia virus-related virus (XMRV) and chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply on Mr Lansley’s behalf.

Whilst the Department of Health agrees with the World Health Organization’s classification of CFS/ME as a neurological condition of unknown cause, it has many different potential causal factors, including those of a neurological, endocrinal, immunological, genetic, psychiatric and infectious nature, which have been investigated, but the diverse nature of the symptoms cannot yet be fully explained.

More research into the causative factors of CFS/ME is needed. The Medical Research Council (MRC) has recently identified and prioritised research topics where high-quality proposals should be encouraged. This exercise involved both experts in the field of CFS/ME and research leaders in aligned areas. Further information on this work can be found on the MRC website at:

www.mrc.ac.uk/Ourresearch/ResearchInitiatives/CFSME/index.htm

.

Regarding the recent interest in XMRV, its possible role in the causation of CFS/ME remains a source of debate within the scientific community. A recent study in the USA reported that XMRV has been detected in a number of CFS/ME sufferers. The results of this study have not been replicated in Europe. An ongoing research programme characterising XMRV at the MRC’s National Institute for Medical Research recently investigated the basis for this finding. The study, which was funded jointly by the MRC, the Wellcome Trust and the CFS Research Foundation, failed to replicate the findings of other studies in this area and found no association between XMRV and CFS/ME.

In addition, an expert subgroup of the National Expert Panel for New and Emerging Infections (NEPNEI) met in May 2010 to consider all available evidence about XMRV and conduct a risk assessment. The subgroup concluded that XMRV can infect humans but there is currently no evidence that it causes human disease and that, on the evidence before the group, no public health action is required at this time. Since the subgroup meeting in May there has been no new scientific evidence that would change these conclusions. In July, the Advisory Committee on the Safety of Blood, Tissues and Organs (SaBTO), similarly decided not to recommend further measures at present. Both groups will continue to monitor the situation.

Both NHS Blood and Transplant (NHSBT) and Health Protection Agency (HPA) experts concur with the views expressed by NEPNEI and SaBTO and also recognise the need for further research on the prevalence of XMRV in the UK. In a recent unpublished pilot study conducted by NHSBT/HPA, a series of 540 randomly selected English blood donors were screened for XMRV and none were found to be infected.

I hope this reply is helpful.

Christopher Bird
Customer Service Centre
Department of Health