Charlotte CFS/ME/FM Support Group Newsletter

for April 1, 2013

 

Hi Friends,

Here are some articles you may find interesting - not that everyone finds every article to their liking - but that each of you might find at least one that's either interesting or helpful:

And I'll send out a meeting reminder when I have information about the next meet since right now its not available to me.  The next meeting is April 18th.

Nancy

 

 

Here's some info I acquired a long time ago and thought it worth sharing again (assuming I shared it before):

B. Neurological impairments

At least one symptom from three of the following four symptom categories

1. Neurocognitive impairments

a. Difficulty processing information: slowed thought, impaired concentration e.g. confusion, disorientation, cognitive overload, difficulty with making decisions, slowed speech, acquired or exertional dyslexia

b. Short-term memory loss:e.g. difficulty remembering what one wanted to say, what one was saying, retrieving words, recalling information, poor working memory

2. Pain

a. Headaches:e.g. chronic, generalized headaches often involve aching of the eyes, behind the eyes or back of the head that may be associated with cervical muscle tension; migraine; tension headaches

b. Significant pain can be experienced in muscles, muscle-tendon junctions, joints, abdomen or chest. It is noninflammatory in nature and often migrates. e.g. generalized hyperalgesia, widespread pain (may meet fibromyalgia criteria), myofascial or radiating pain

3. Sleep disturbance

a. Disturbed sleep patterns:e.g. insomnia, prolonged sleep including naps, sleeping most of the day and being awake most of the night, frequent awakenings, awaking much earlier than before illness onset, vivid dreams/nightmares

b. Unrefreshed sleep:e.g. awaken feeling exhausted regardless of duration of sleep, day-time sleepiness

4. Neurosensory, perceptual and motor disturbances

a. Neurosensory and perceptual:e.g. inability to focus vision, sensitivity to light, noise, vibration, odour, taste and touch; impaired depth perception

b. Motor:e.g. muscle weakness, twitching, poor coordination, feeling unsteady on feet, ataxia

Notes: Neurocognitive impairments, reported or observed, become more pronounced with fatigue.Overload phenomenamay be evident when two tasks are performed simultaneously. Abnormal accommodation responsesof the pupils are common.Sleep disturbancesare typically expressed by prolonged sleep, sometimes extreme, in the acute phase and often evolve into marked sleep reversal in the chronic stage.Motor disturbancesmay not be evident in mild or moderate cases but abnormal tandem gait and positive Romberg test may be observed in severe cases.

 

 

Legal Information - Social Security, etc.

 

For some time now I have been getting a newsletter from Lynn Bishop's office.  The December issue describeds how important it is to get information correct when applying for disability benefits:

 

This is what is important

 

- Make use of free in-service training or talks to organizations to learn how the "system" works.

- Nationally 65% of initial applications are denied.  Disability applications ae up 30% over the past 2 years.

- Ms Bishops practice is local making it important that they know how things work around this area. SS is a huge machine with creaky gearshifts that are lubricated by providing the precise info requires, in the form needed.  A well-presented claim can shave off years of waiting time.

- The "List of Compassionate Allowance diseases was again expanded this year. Correctly presented claims can get a decision within 2 weeeks.

- The regulations on Fibromyalgia cases have been improved for claimants. Let us explaiin how this can help.

** Cases at the hearing level can be presented for an "on the record decision" in some situationscustting the usual waiting time.

Ms. Bishops office is at 101 N. McDowell St., Suite 206. You can phone her at 704-376-7461.  You can call for a free consultation. Her web site is at www.lynnbishop.net where you can sign up for a free paper newsletter.

 

 

Date:    Mon, 18 Mar 2013 09:50:02 -0400
From:    Sue * <
Honda4fun@AOL.COM>
Subject: We're in the top 3 - Nature's Bounty Charities Voting

We're in the top 3, but the 4th is close behind

REACH FOR THE RAINBOW ONTARIO ....... 30138
Alberta Animal Rescue Crew Society .............  27776
NATIONAL ME/FM ACTION NETWORK ........ .13964  please vote
MOUNTAINAIRE AVIAN RESCUE SOCIETY ...13856
SENIOR ANIMALS IN NEED TODAY SOCIETY ..858

http://www.sharethebounty.ca/index.php

 

 

 

Read About the Return of Kevin Lord and his not-so-regular days after Ampligen Treatment

http://www.cortjohnson.org/blog/2013/02/28/kelvin-lord-returns/

 

 

Scared Stiff?  Exploring anxiety, Autoimmunity and Infection in Stiff Person Syndrome -- A Possible Model for CFS by Marco 3/24/2013

(In his second of two blogs on Stiff Person Syndrome and ME/CFS Marco asks “Is the depression/anxiety present in Stiff Person Syndrome (and, possibly by reflection ME/CFS), a consequence of having a difficult disease or is it an inherent part of the illness itself?”

This debate – which parts of an illness belong to the mind (false beliefs?) and which belong to the body (infection, autoimmunity, etc) – are being played out in many other diseases, including, of course, ME/CFS. Let’s see if we can get some insights into this crucial question in ME/CFS by looking at Stiff Person Syndrome – our model of the glutamate/GABA imbalance that may be occurring in ME/CFS and other neuroinflammatory disorders. Cort)

 

Are 'Cor-morbid' Anxiety and Depression An Essential Part of Stiff Person Syndrome?

Is the depression and anxiety in SPS and ME/CFS a function of the disease itself or simply the result of having a chronic illness?

Like chronic fatigue syndrome there are questions whether the anxiety (arousal) or depression found in SPS is an inherent part of it or whether they are simply normal reactions to having a chronic illness .

No one believes chronic fatigue syndrome is major depression or generalized anxiety disorder; the question is whether the two, in some places, share some common ground with ME/CFS and if they do, is it due to the illness or the consequences of having a chronic illness? To read on;

http://www.cortjohnson.org/blog/2013/03/24/scared-stiff-anxiety-autoimmunity-and-infection-in-stiff-person-syndrome-a-possible-model-for-chronic-fatigue-syndrome/

 

From the ME/CFS/FM/GWS Community Site

Comment by Moderator on March 10, 2013 at 11:32am

Note: According to wiki -Tramadol hydrochloride (trademarked as Conzip, Ryzolt, Ultracet, Ultram in the USA, Ralivia, Zytram XL and Durella{CR-100/200mg} in Canada) is a centrally acting synthetic analgesic used to treat moderate to moderately severe pain. The drug has a wide range of applications, including treatment of rheumatoid arthritis, restless legs syndrome, motor neurone disease and fibromyalgia. It was launched and marketed as Tramal by the German pharmaceutical company Grünenthal GmbH in 1977.[1][2]

Tramadol is a very weak μ-opioid receptor agonist, induces serotonin release, and inhibits the reuptake of norepinephrine.

1) Researchers launch study on dual fibromyalgia treatment

The Fibromyalgia Research Program at the University of Washington is conducting a study to determine if combining two types of treatment can benefit patients who have been diagnosed with fibromyalgia, a chronic pain disorder affecting approximately 4 million Americans.

Patients will be tested over the course of 15 weeks to determine the effectiveness of combining pharmacological and nonpharmacological treatment. They will receive either a placebo or tramadol, an FDA-approved drug used for treatment of moderate to severe pain.

The patients will then be treated with either cognitive behavioral therapy or health education.

Dr. Dennis Turk, University of Washington, one of the researchers working on the study, is confident that combining pharmacological and nonpharmacological treatments will help patients. He said studies have shown that tramadol (Ultram) is an effective treatment for fibromyalgia, though there hasn’t been a study that has compared the dual use of tramadol and a nonpharmacological treatment.

Though the program’s combination theory hasn’t been tested, Turk said one treatment isn’t enough. He added that 40 percent of patients see a 30 percent benefit from each treatment. But this leaves a lot of patients still experiencing symptoms of fibromyalgia.

Turk, who researches other chronic pain conditions, such as back pain and whiplash injuries, has studied fibromyalgia since 1996. He said he wants to do whatever he can to help those with the condition.

“Fibromyalgia is particularly interesting because it has so many co-occurring features,” he said. “It’s so prevalent, and we are so poor at handling it very well that the challenges are great, the opportunities are great, and the ability to potentially improve the function and quality of life of a large number of people makes this a target that I would find very interesting.”

Dr. James Robinson, another researcher involved in the study, is also eager to help improve the lives of people with the disorder.

“These patients are often quite desperate,” Robinson said. “There are many practitioners who will offer all sorts of strange therapies, and the patients — in my mind — are at risk to get inappropriate overtreatment.

It’d be nice to know what we’re doing based on evidence.”

The Fibromyalgia Research Program is still looking for patients to participate in the study.

For more information: http://clinicaltrials.gov/ct2/show/NCT01598753?term=Turk&rank=11

2)  NIH Awards Nearly $2 Million to NYC Institutions to Close the Scientific Gap in Chronic Fatigue Syndrome Research

Weill Cornell Medical College has been awarded more than $1.9 million by the National Institute of Mental Health of the National Institutes of Health to lead an innovative research study using advanced neuroimaging and clinical evaluations of patients with chronic fatigue syndrome (CFS).

The new four-year clinical study, to be conducted in collaboration with Icahn School of Medicine at Mount Sinai and Beth Israel Medical Center, will aim to expand the scientific understanding of CFS, improve diagnostics for the condition and discover novel biomarkers, all of which may lead to the identification of new and more effective treatment targets.

This NIH supported clinical research study will build upon the last seven years of research conducted by the partnering institutions Weill Cornell, Mount Sinai and Beth Israel. In recent small pilot clinical studies, generously supported by The CFIDS Association of America, these three academic medical research centers have investigated CFS using sophisticated neuroimaging and battery of clinical tests.

Their preliminary, small pilot study findings show the key culprit in CFS may be increased and sustained oxidative stress evidenced in the neuroimaging scans, blood and bodily fluid tests of CFS patients. Specifically, their research shows levels of cortical glutathione (GSH) — the most abundant and one of the most important antioxidants in living tissue — are decreased by 36 percent in CFS patients.

This novel cortical GSH deficit finding was also correlated with those patients with increased levels of blood markers of oxidative stress and symptoms of CFS. Study results also show CFS patients also have significantly elevated ventricular cerebrospinal fluid (CSF) lactate and decreased regional cerebral blood flow (rCBF).

Researchers found in their pilot studies that the abnormalities identified in CFS patients are similar to the abnormalities witnessed in MDD patients. In the new study, researchers hope to decode CFS and distinguish it from neuropsychiatric conditions such as MDD. This current uncertainty makes it critical for research studies to investigate the nature of comorbidity in CFS.

"The discovery of specific biomarkers that can differentiate CFS from similarly presenting psychiatric disorders will have a profound impact for how the disorder is perceived, managed, diagnosed and for the development of objective diagnostic tests, therapeutic targets and advanced scientific understanding of this mysterious debilitating illness," says Dr. Shungu.

Researchers believe this study is highly innovative, representing a departure from nearly all previous studies for CFS to date. They trust it may be the first comprehensive attempt to identify brain biomarkers for the condition.

Other study investigators include Dr. Benjamin Natelson of Beth Israel and Dr. Dan Iosifescu of Mount Sinai. For this study, Weill Cornell, Mount Sinai and Beth Israel plan to enroll 40 patients with CFS, 40 MDD patients and 20 healthy controls. To learn more about enrolling in the study, call 212-746-2632.

This research is supported by the National Institute of Mental Health of the National Institutes of Health under Award Number R01MH100005.

 

To get on distribution for these studies, etc., go to

ME-CFSCommunity.com and sign up for membership and you'll receive periodic newsletters. This also gives you the ability to sign on and read articles.