Charlotte CFS/ME/FM Support Group Newsletter

for December 15, 2013

 

Merry Christmas and Happy New Year

 

And I wish the very best to all during this season of celebration and caring.

 

November 19th is our annual Christmas party.  I hope those of you who can will join us and bring a dish or goodie to share if you can.  I'm pulling together some door prizes to make it even more fun!

 

Directions:  As always, our meetings are at 7:00 PM at Sharon Presbyterian Church ( 7-9 PM), located 0.8 miles south of SouthPark Mall at 5201 Sharon Road.  Use the entrance closest to the mall if you can. There is a second entrance but you'll have to weave around in order to find the parking lot to the left of the sanctuary building (left as you would be facing the building). 

 

We meet in the Charles Little Activity Building (or CLAB), which is the brick building at the rear of the parking lot.  We have a new meeting room - Classroom 6.  When you come into the building, go past the door to the Parlor where we used to meet and walk into the gym and immediately turn left. You come to a door marked "6" where we meet.

 

Remember no perfumes so as not to make those with MCS ill and no smoking anywhere on the church grounds.

 

NOTE:  Members, if you are anticipating a move to a new Internet provider, be sure to email me your new email addy.  If I somehow miss it - and I could - don't hesitate to remind me if you don't receive a newsletter.  Our meetings are always the 3rd Thursday of the month so if you don't get the reminder, email me again.

 

 

Upcoming Meetings

 

I hope that a few other providers might choose to join us that live in our area.  You can just stop by even if you can't attend the entire 2 hour party.

 

January 16, 2014 - There is no regular meeting in January but the support group board members will use this time (and same meeting place) to plan for all the 2014 meetings.  And anyone who is interested in volunteering their time in any way possible, please come to this meeting to see what its all about. You are under no obligation to make a commitment just because you attend the board meeting

 

We can always use help is setting up chairs, bringing refreshments (you get reimbursed for the cost), suggesting a speaker and perhaps contacting them if we agree that person would be a good candidate to speak to our group. 

 

 

Topics in this Newsletter

-  MECFSAlert's Newest YouTube Videos on ME/CFS

-  The Carolina Center for Rheumatology - Fibromyalgia Study

-  The B-12/Folate ME/CFS/FM Study

-  IOM and the Clinical Case Definition Committee - A Case for Hope

-  Cognitive Dysfunction in ME/CFS and Fibromyalgia

-  On Celiac Disease, Gluten sensitivity and ME/CTS Pt. 1

-  Check Out Fibromhyalgia Breakthrough (From Co-cure)

 

 

 

MECFSAlert's Newest YouTube Video on ME/CFS

 

This is an excellent talk by Llewellyn King really important for family, etc. and clinicians to view to take one more step towards understanding the severity and nature of this disease.

 

http://www.youtube.com/watch?v=CkY80jNw1qo&feature=em-uploademail 

 

Also:

 

This next video is an interview of Dan Peterson, MD, a clinician (along with Dr. Paul Cheney) who first treated the patients during the 1980's epidemic in the Lake Tahoe area.  His talk is about 20 minutes long - actually Deborah Waroff asks Dan various questions and his answers are extremely interesting and informative. These should be shared with as many ME/CFS patients as possible.

 

http://www.youtube.com/watch?v=Sdoj53qM97c

 

To see some of the advocacy for ME/CFS go to:

 

http://www.whchronicle.com/

 

 

 

 

The Carolina Center for Rheumatology and PMG Research of Charlotte are conducting a research study for people with fibromyalgia. To qualify for the study you must:

  • Be 18 to 59 years old
  • Have a diagnosis of fibromyalgia from your doctor
  • Experience widespread pain throughout your body from the fibromyalgia

All study-related investigational medications or placebo and study-related procedures are at no cost to you. Compensation may be provided for your time and travel.

 

Enrollment is open for a limited time so please contact the link below if you or someone you know has fibromyalgia.

http://www.pmg-research.com/about-us/contact-us.aspx?utm_source=nl&utm_medium=email&utm_content=charlottetherovancefibromyalgiastudy&utm_campaign=ottetherovancefibromyalgiastudy

 

 


 

 

 

 

 

BRINGING RELIEF TO MANY: THE B-12/FOLATE ME/CFS/FM CROWDFUND TRIAL BEGINS PETERSON/KOGELNIK ON BOARD

 

By Cort Johnson on December 5, 2013

 

Opportunities abound to make a difference in ME/CFS, but the Open Medicine Institute  (OMI) may have hit on the quickest way to do that for the most people.  Could a simple, inexpensive treatment provide more energy for many?

 

What if an effective, relatively inexpensive and readily available treatment was available right now? What if all that was standing between you and others receiving that treatment was your doctors lack of knowledge?

 

What if that could be remedied?

 

On her recent trip to Sweden with Dr. Peterson, doctors at the Gothries clinic excitedly told OMI executive director Linda Tannenbaum about some successes they were having in this difficult to treat disease. An inexpensive treatment featuring B-12 and folate was  helping 20-50% of  ME/CFS/FM patients with the MTHFR mutation. They were more energized. Their brain fog was clearing. They werent well, but their quality of life was much improved.

 

To continue reading this article, go to:

http://www.cortjohnson.org/blog/2013/12/05/bringing-relief-many-chronic-fatigue-syndrome-fibromyalgia-b-12-folate-crowdfund-trial-begins/

 

 

IOM and the Clinical Case Definition Committee A Case for Hope

In August, the NIH Office of Womens Health announced its intent to contract with the Institute of Medicine (IOM) to form a committee to propose diagnostic criteria for ME/CFS.  On Tuesday, December 3, the IOM announced the provisional committee slate for this work. It has been posted and all are invited to review the slate and provide feedback.  

To continue reading this article, go to

http://solvecfs.org/iom-and-the-clinical-case-definition-committee-a-case-for-hope/

 

 

Cognitive dysfunction in CFS/ME  (This is from Dr. Lapp's October newsletter and I meant to put a link to it but decided it warranted putting the whole article in.)

Note from Nancy:  I checked with Dr. Lapp on this and it was an oversight that he did not include Fibromyalgia in the title. As he explained to me, ME/CFS patients tend to have more problems with cognitive issues than Fibro patients.  However, and I think he'd agree with me, we can' discount the fact that many fibro patients also have ME/CFS but haven't been diagnosed.

 

CFS/ME is characterized by four core symptoms: exertional fatigue, muscle pain or headache, sleep disruption or non-restorative sleep, and cognitive dysfunction. Cognitive problems have been cited as one of the most disruptive and functionally disabling symptoms of CFS, with up to 85% of patients reporting impairments. Most affected are attention, concentration, memory, calculation, and processing speed. These lead to problems such as word searching, losing the train of thought, difficulty reading and comprehending, difficulty with mental math (such as making change ), brief periods of confusion or disorientation, and foolish errors, such as putting milk in the closet instead of the refrigerator, or leaving the stove running. Many PWCs find themselves easily distracted, and will go from one task to another, never completing any of them!

Testing for cognitive difficulties doesnt always correlate with persons day-to-day complaints, however.  First, testing is not very sensitive or specifically directed at CFS-related complaints, so the right tests must be administered in order to get results. Secondly, very intellectual patients show relatively little decline. For example, a person with a very high IQ of 140, say, may drop 30 points to an IQ of 110; however, this is still above average. So the PWC notes a significant decline in ability, but an examiner would testify that this individual should have no problems.

Neuropsychological testing is not the only way to demonstrate cognitive deficits. Cranial MRIs show UBOs or Unidentified Bright Objects of inflammation in the brains of up to 80% of our PWCs. PWCs with UBOs report being more physically impaired than those patients without brain abnormalities.

SPECT scanning can reveal decreased blood flow in key areas of the brain such as the temporal lobes, amygdala, hippocampus, and midbrain, while PET scanning may display areas of brainstem hypometabolism. Several researchers have shown that cerebral volume is reduced in PWCs with the most severe deficits. Surprisingly, such brain shrinkage can be prevented or reversed by physical activity.

Finally, Japanese studies have confirmed that body levels of carnitine or acetyl-carnitine correlate with cognitive deficits. The lower the carnitine, the more cognitive difficulties. Supplementing with carnitine seems to improve thinking, concentration, and memory.

So what can be done to improve cognition? First of all, try to stimulate and exercise your mind. Consider jigsaw and crossword puzzles, word games, card or board games, and computer games. Numerous mind-stimulating websites are available also, such as www.lumosity.com, whose authors have a special interest in CFS/ME.

Certain supplements have shown promise as well, most notably carnitine or acetyl-carnitine at 1000 mg/day. These are available over-the-counter or by prescription. Gingko biloba (over-the-counter) has been touted to increase cerebral blood flow and improve mentation, and many practitioners recommend supplementation with phosphatidyl serine.

Defects in folate and B12 metabolism have been thought to affect brain function, so supplementation with B12 (say, methylcobalamin 1000mcg to 5000mcg daily) and methylfolate (400mcg daily) may be prudent. More potent prescription medications are available such as Deplin ( 15 mg of methylfolate), Metanx ( 3 mg methylfolate / 2 mg B12 / 35mg pyridoxil-5-phosphate), and Cerefolin NAC (methylfolate 5.6mg, B12 2mg, N-acetyl cysteine 600mg).

Recently pharmaceutical companies have been developing products that claim to improve cognition in a wide variety of conditions, including Alzheimers Disease. These products include Vayacog (omega-3 fatty acids 26mg + phosphatidyl serine 100mg), Axona (an alternative energy source that the brain can use instead of glucose, 40 gm twice daily), Procera AVH (acetyl-carnitine + vinpocetine+ huperzine), and Prevagen (a jellyfish extract that affects calcium channels). All require prescriptions from your doctor. Unfortunately, we are not aware that any of these have undergone rigorous study in PWCs.

Several Alzheimers medications have undergone brief trials in PWCs, including galantamine (Razadyne), donezepil (Aricept), and memantine (Namenda). In brief summary, some PWCs will respond to these medications, but no subset of responders has been identified and most do not respond. In general we do not recommend these medications unless dementia unrelated to CFS/ME is suspected.

 

Cealiac Disease from Cort Johnson

This is an old article but I don't think I ever shared it with you.  What with the holidays and the possibility of eating more "bad" stuff, I thought it appropriate to get this info to you.

Is Your Worst Fear Sitting in Your Cupboard? Niki Gratix On Celiac Disease, Gluten Sensitivity and ME/CFS Pt. I

 

 

Nutritionist and ME/CFS practitioner Niki Gratrix's views on ME/CFS took a ninety degree turn after listening to celiac specialist, Dr. Tom O'Bryan. Celiac disease or gluten sensitivity is no joke; it's been been linked to increased mortality and increased incidence of many major disorders.

With all the other sensitivities present in this community you can just bet gluten sensitivity is alive and well (and mostly not discussed). You probably didn't know, for instance, that gut symptoms are not a prerequisite, and that the variant of celiac disease probably most often found in ME/CFS (and rarely diagnosed), is actually worse than diagnosed celiac disease.

Could your worst nightmare be sitting in your cupboard? This blog made me wonder.

Please welcome Niki Gratix to Health Rising as she begins a three part series on celiac disease, gluten sensitivity and ME/CFS in (the following link) and to read the whole series just check out Cort's bog, they're easily found

http://www.cortjohnson.org/blog/2013/08/29/celiac-disease-gluten-sensitivity-and-chronic-fatigue-syndrome-pt-1-misdiagnosis-and-mortalit/

 

 

Check Out Fibromyalgia Breatkthrough - From Co-Cure

 

Date:    Tue, 3 Dec 2013 02:49:21 -0500
From:   
"Karen M. Campbell" <SacWriterEditor@AOL.COM>
Subject: Check out Fibromyalgia Breakthrough - Treat The Causes, Not Just The Symptoms

_Fibromyalgia  Breakthrough - Treat The Causes, Not Just The Symptoms_
( http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-
syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease ) 

The only ones benefiting from lifelong symptom treatments associated with chronic fatigue syndrome, lupus, autoimmune disease, or fibromyalgia are the pharmaceutical companies who sell billions in medication to treat them. A long  list of pain medications, sleep-aids, anti-depressants, and anti-inflammatories  are not sufficient because the diagnosis is incorrect. Instead, let's look at  what the possible causes are to these diseases. See more at: 

http://www.envita.com/lyme-disease/finally-one-link-established-chronic-fatigue-syndrome-cfs-lupus-fibromyalgia-autoimmune-disease-chronic-lyme-disease#sthash.HdgHqujD.dpuf


 

Support Group Leader, Board Members, and Sources of Info for Doctors and Patients:

-  Kebbie Cannon is our Support Group Leader (704) 843-1193 at kebbie1@windstream.net

- Medical Advisor Dr. Charles Lapp, Hunter Hopkins Clinic in Charlotte. You can visit Dr. Lapp's Web Site at www.drlapp.com where there is ample info about his clinic and making an appointment if you need. It offers many links to other sources of information.

- http://www.cfidsselfhelp.org/ - Going thru Dr. Lapp's site you'll find links to various sorts of help, one of the best self help sites on the Internet is Bruce Campbell's self-help site (Dr. Lapp was involved in this).

- Treatment - Another site, which is primarily directed toward helping your doctors treat these disorders but that info is quite beneficial for patients to be aware of, is: http://www.cfstreatment.info/

- Valuable Site for ME/CFS/FM Information by Cort Johnson http://www.cortjohnson.org/

- Long Time Source of Help for ME/CFS/FM and related disorders along with supplements with proceeds of sales going to help ME/CFS/FM

http://www.prohealth.com/index.cfm

- Treasurer is Leslie Vann at llvann@usa.net

- Newsletter Editor is Nancy Henson at nmhenson@aol.com

- Publicity Chairman is Howard Honeycutt at honeycutt2194@carolina.rr.com

 

- Visit our web site at www.CharlotteCFS.org