Hi Everyone,

Our speaker for the May 20th meeting is Disability Attorney George Piamonte. I'll send a reminder for this meeting around the 15th.

The meeting is at Sharon Presbyterian Church ( 7-9PM), 0.8 miles south of South Park Mall; Sharon Presbyterian Church is located 0.8 miles south of SouthPark Mall on Sharon Road.  Use the entrance closest to the mall.  We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot. As you come into the building, go into the first door on your right. This is the Parlor of that building where we have our meetings.

For anyone who is new, our meetings generally wind down around 8:30pm so that we have time for refreshments and to talk with other members and/or the speaker for the evening. Remember no perfumes for those with MCS and no smoking anywhere on the church grounds.

The June 17  meeting will have one of our favorites, Dr. Nancy Waring, PhD., a therapist who has CFS & Fibro will speak to us on coping with chronic illness. Dr. Waring is from Carmel Baptist Counseling Center, 1145 Pineville-Matthews Rd., Matthews, NC 28105.

Reminder:  CFS/FM Support Group Board Meeting at Dr. Lapp's Office is May 6th at 7PM

July and August - Luncheons (TBA)

The support group needs your help - I find myself at a place once again where I cannot continue as I have with the newsletter. More and more I find myself as more of a caregiver at times. But, I will continue sending meeting reminders or anything of a crucial nature on FM.

But gradually throughout the summer I will discontinue information regarding Fibromyalgia so I apologize for the length of this newsletter as I try to give you .  I no longer have time to scan them and pull out important issues for you to read. It is essential that you get on distribution for these newsletters you are interested in if you want to keep up with the latest with Fibromyalgia. My primary diagnosis is  CFS. I read more about that than I do FM. However, even with CFS info, I don't begin to read as much as I'd like to.

We "may" also need someone who can monitor the doctor list, keep it up-to-date, and keep copies available for the information table - particularly newcomers.  If you know someone who is healthy and would like to do something to help a worthy cause, this would be excellent because it doesn't require attending any meetings.

Newsletters to Subscribe to:

ProHealth 

http://www.prohealth.com/em/EM042110B/index.cfm  - This one comes out once a month for FM alternatively with one for CFS.

Fibromyalgia Network Newsletter - I have not renewed my subscription to this excellent newsletter.  You can go to www.fmnetnews.com to subscribe and to check out the excellent web site.

With a subscription to Fibromyalgia Network, you also get eNews alerts with very valuable information such as an article on Neurontin:  Brain Imaging Predicts Response to Neurontin - http://www.fmnetnews.com/pages/enews/Alert0410_lrg.html#neurontin

Aprils eNews Alert:  http://www.fmnetnews.com/pages/enews/Alert0410_lrg.html

New Clinical Fibromyalgia Diagnostic Criteria

http://www.fmnetnews.com/docs/NewFibroCriteriaSurvey.pdf

Co-Cure Digests - From this source you will be up-to-date  for the most part for CFS and FM and all associated disorders.  Go to the following link to get subscribed.

http://www.co-cure.org/sub1.htm

About.com E-Newsletter by Adrienne Dellwo, Forum Guide and Editor

http://specials.about.com/service/newsletters/chronicfatigue/1272654000.htm

Note from Nancy:  I encourage you to subscribe to this newsletter. Adrienne offers a wealth of information as does the ProHealth newsletter in addition to the forum.

Subject:      Mary Schweitzer testimony to CFSAC for May 2010
Date:         Mon, 26 Apr 2010 23:39:42 +0000
Sender:       ME/CFS and Fibromyalgia Information Exchange Forum

 

I've put my testimony to the CFSAC for May 2010 on my Slightly Alive blog:

http://slightlyalive.blogspot.com/2010/04/testimony-to-cfsac-may-2010.html

Mary Schweitzer

Questions and Answer Session with:
Dr. Judy Mikovits: Principal Investigator, Whittemore-Peterson Institute.

Attachment to IACFS/ME Newsletter (From Co-Cure)
Volume 3, Issue 1 • April 2010
http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf

Health Central Pain News (for FM or Other Pain Causes)

http://www.healthcentral.com/utils/newsweb/chronic-pain/news-sp.html

Newsletter from Adrienne Dellwo, About.com Forum Guide, Who Writes for both CFS and FM and other related health issues:

http://specials.about.com/service/newsletters/chronicfatigue/1272654000.htm

SAVE THE FOLLOWING FOR FUTURE USE:

Recommendations for persons with ME/CFS and Fibromyalgia who are anticipating surgery

Basically CFS is a disorder characterized by severe debilitating fatigue, recurrent flu-like symptoms, muscle pain, and neurocognitive dysfunction such as difficulties with memory, concentration, comprehension, recall, calculation and expression. A sleep disorder is not uncommon.

• All of these symptoms are aggravated by even minimal physical exertion or emotional stress, and relapses may occur spontaneously.

• Although mild immunological abnormalities (T-cell activation, low natural killer cell function, dysglobulinemias, and autoantibodies) are common in CFS, subjects are not immunocompromised and are no more susceptible to opportunistic infections than the general population.

• [Recent research indicates antibodies to the XMRV retrovirus may be present in the blood of some CFS patients,* and] it is not recommended that the blood or harvested tissues of patients be used in others.

• Intracellular magnesium and potassium depletion has been reported in CFS. For this reason, serum magnesium and potassium levels should be checked pre-operatively and these minerals replenished if borderline or low. Intracellular magnesium or potassium depletion could potentially lead to cardiac arrhythmias under anesthesia.

• Up to 97% of persons with CFS demonstrate vasovagal syncope (neurally mediated hypotension) on tilt table testing, and a majority of these can be shown to have low plasma volumes, low RBC mass, and venous pooling. Syncope may be precipitated by cathecholamines (epinephrine), sympathomimetics (isoproterenol), and vasodilators (nitric oxide, nitroglycerin, a-blockers, and hypotensive agents). Care should be taken to hydrate patients prior to surgery and to avoid drugs that stimulate neurogenic syncope or lower blood pressure.

• Allergic reactions are seen more commonly in persons with CFS than the general population. For this reason, histamine-releasing anesthetic agents (such as pentothal) and muscle relaxants (curare, Tracrium, and Mevacurium) are best avoided if possible. Propofol, midazolam, and fentanyl are generally well-tolerated.

• Most CFS patients are also extremely sensitive to sedative medications - including benzodiazepines, antihistamines, and psychotropics - which should be used sparingly and in small doses until the patient’s response can be assessed.

• Herbs and complementary and alternative therapies are frequently used by persons with CFS and FM. Patients should inform the anesthesiologist of any and all such therapies, and they are advised to withhold such treatments for at least a week prior to surgery, if possible. Of most concern are:

Garlic, ginkgo, and ginseng (which increase bleeding by inhibiting platelet aggregation);

Ephedra or ma huang (may cause hemodynamic instability, hypertension, tachycardia, or arrhythmia),

Kava and valerian (increase sedation),

St. John’s Wort (multiple pharmacological interactions due to induction of Cytochrome P450 enzymes),

Echinacea (allergic reactions and possible immunosuppression with long term use).

• The American Society of Anesthesiologists recommends that all herbal medications be discontinued 2 to 3 weeks before an elective procedure. Stopping kava may trigger withdrawal, so this herbal (also known as awa, kawa, and intoxicating pepper) should be tapered over 2 to 3 days.

• Finally, HPGA Axis Suppression is almost universally present in persons with CFS, but rarely suppresses cortisol production enough to be problematic. Seriously ill patients might be screened, however, with a 24-hour urine free cortisol level (spot or random specimens are usually normal) or Cortrosyn stimulation test, and provided cortisol supplementation if warranted. Those patients who are being supplemented with cortisol should have their doses doubled or tripled before and after surgery.

Summary Recommendations

1. Ensure that serum magnesium and potassium levels are adequate.

2. Hydrate the patient prior to surgery.

3. Use catecholamines, sympathomimetics, vasodilators, and hypotensive agents with caution.

4. Avoid histamine-releasing anesthetic and muscle-relaxing agents if possible.

5. Use sedating drugs sparingly.

6. Ask about herbs and supplements, and advise patients to taper off such therapies at least one week before surgery.

7. Consider cortisol supplementation in patients who are chronically on steroid medications or who are seriously ill.

8. Relapses are not uncommon following major operative procedures, and healing is said to be slow but there are no data to support this contention.

* * * *

I hope that you have found these comments useful, and that they will serve to reduce the risk of surgical procedures.

Charles W. Lapp, MD:
Director, Hunter-Hopkins Center, P.A.
7421 Carmel Executive Park Drive, Suite 320
Charlotte, NC 28226
Telephone (704) 543 9692; Fax (704) 543-8547
Website: www.drlapp.net
- Assistant Consulting Professor at Duke University Medical Center
- Diplomate, American Board of Internal Medicine
- Fellow, American Board of Pediatrics
- American Board of Independent Medical Examiners

Another Good Article from Co-Cure with links to informative XMRV Information

 Date:    Wed, 28 Apr 2010 13:16:11 -0400
From:    Richard Crouse <rscrouse@COMCAST.NET>
Subject: RES: XMRV Update

[The following information is provided by Jacob Teitelbaum, MD, Medical
Director of the Fibromyalgia & Fatigue Centers, Inc.]

Dr. Teitelbaum's April 2010 free newsletter is now out. It includes:

XMRV UPDATE

Though European studies have not shown XMRV to be present in repeated
studies, this does not mean the case is closed. In the same way I encouraged
caution when the report first came out (generating a large amount of angry
mail in the blog world), I also now note that XMRV still warrants serious
investigation and an open mind. When XMRV was first found in a subset of
prostate cancer patients, the association was only found in American, and
not European, studies. I simply recommend we give the research time to
unfold. As I noted earlier, while doing the testing themselves, those
repeating the WPI study should also send blinded blood samples to the WPI to
see if their results match with those patients who have CFS versus those who
are healthy, and also match with their independent findings. See:

The good news? This has begun, with a full blown Federal XMRV study
involving 6 different centers, including the WPI.

This is discussed in an excellent blog by Cort Johnson, one of my favorite
CFS reporters. See:

http://blog.aboutmecfs.org/?p=1331

Meanwhile, for those following the action, another wonderful blog post also
by Cort Johnson discusses new XMRV excitement in a Utah Lab. What I find
interesting is the involvement of several researchers I also have a lot of
respect for - Drs. Light & Light (a husband/wife team - watch for an
upcoming newsletter report on their work) and Dr. Batemen. See:

http://www.forums.aboutmecfs.org/content.php?90-A-Light-in-the-Darkness-Good-News-Ahead-for-XMRV

Meanwhile, a Japanese study found XMRV in 1.7% of the general population and
6.3% of those with prostate cancer. My guess? The XMRV virus is more
commonly seen in the U.S. than in Europe, and is one of many triggers in the
CFS population. See:

http://www.diagnosesupport.com/health/index.php?option=com_content&view=article&id=305:the-prevalence-of-xenotropic-murine-leukemia-virus-related-virus-in&catid=132:xmrv-research&Itemid=8

P.A.N.D.O.R.A (Subscribe to the newsletter of this very important organization)

 Patient Alliance for Neuroendocrineimmune - Disorders Organization for Research and Advocacy, Inc. | A not for profit 501 (c) (3) charitable organization | Business Office: c/o Vina & Company, 255 Alhambra Circle, Suite 715 | Coral Gables | FL | 33134

http://campaign.constantcontact.com/render?v=001vAT3y6bgAL4NF9KbDGPQ8x6HU_OmqFPDcKJE-PPYiwn2AQqctiBPXxMhAwk1gh8AO70PLlqsbdMVTtFoV5ch3IEufvsTPYhVxWaAyGyLPA4%3D

Nancy Henson, Editor

Charlotte ME/CFS/FM Support Group

www.charlottecfs.org