Hot Topics & Readers’ Notes – 06-06-12

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Tweet Coverage of June 1 London Invest in ME Conference

The June 1 IiME Conference featured presentations by the top figures in ME/CFS research, and until more detailed reports emerge, we have a link to the moment-by-moment tweets of journalist Jorgen Jelstad, thanks to XMRV Global Action. See “Invest in ME 2012.”

The first of Jorgen’s tweets to be shared widely around the Web cited a comment by Dr. Daniel Peterson, in summarizing current research, to the effect that the Lipkin study is completed and results will be released June 30. Jorgen later tweeted that he has learned the info given in the lecture was wrong; it is not due for release on June 30. So we’re back to waiting. And what’s the Lipkin study? Virus hunter Ian Lipkin, MD, at Columbia has been heading up what he calls “the XMRV/MLV/CFS/ME study” to search for evidence of viruses in blood samples from a well-characterized, geographically distributed US cohort of ME/CFS patients, using cutting edge virus-detecting technology.

PS: On Tuesday, June 5, CFS Patient Advocate Chris Kairns posted a good blog on conference highlights here (scroll down). He also had reported the (erroneous) Lipkin study announcement. As always, Chris provides interesting perspectives, and also reminds us that IiME will make reasonably priced DVDs of the entire conference available soon.


IACFS/ME Announces Future Launch of New Journal – Fatigue

The IACFS/ME is launching a quarterly, subscription based peer review journal – the first to be focused on fatigue: Fatigue: Biomedicine, Health and Behavior. (“Addressing the symptom of fatigue in medical illnesses, behavioral disorders, and specific environmental conditions.”) 

As explained in a June 2 news release from IACFS/ME President Fred Friedberg, PhD (, the first issue is set for Jan 2013. Dr. Friedberg will be the journal’s editor, publication is free to authors whose manuscripts are accepted, and the editorial staff is now accepting submissions. (For author and submission information, see the still-developing journal website –

According to the news release, the broad focus on fatigue rather than ME/CFS (already causing a furor in the never-docile patient community) reflects lessons learned with the Journal of Chronic Fatigue Syndrome, defunct since 2008. JCFS was never indexed in Medline (the National Library of Medicine’s free biomedical journal abstract database), so abstracts were not widely shared. The IACFS/ME hopes Fatigue will succeed based on its broader  multidisciplinary focus, hoped-for Medline listing, and backing by a major academic publisher to provide the promotion, marketing and advertising to medical libraries, conferences and other professional events required for the success of any biomedical journal. For more see the June 2 announcement


ME Clinical Autoimmunity Working Group Meets

To raise awareness of ME, and promote collaboration, innovation and foundations for a clearer strategy of biomedical research into ME, Invest in ME has joined with the Alison Hunter Memorial Foundation of Australia – in cooperation with Bond University and the University of East Anglia – to establish a Clinical Autoimmunity Working Group dedicated to exploring autoimmunity in ME/CFS (and offering patients a facility “where proper diagnosis can be made”). For more about the group and their first meeting in London May 30-31, see the Media Briefing.   


Cognitive Impairment in Lyme (and ME/CFS)

The Canadian Lyme Disease Association has published an article titled “Lyme Disease and Cognitive Impairments,” by Lyme expert Robert Bransfield, MD. He begins his discussion explaining that cognitive impairments with Lyme disease are very different than those of Alzheimer’s, but that “some of the symptoms I will describe are also found in encephalopathies associated with other illnesses, such as chronic fatigue syndrome….” He describes the clinical assessment of problems with attention span, memory, processing, imagery, and organizing and planning. Read more here.


Free Interstitial Cystitis Bladder Function & Symptom Tracking App

On May 22 at the American Urological Association (AUA) meeting, a free ‘Bladder Pal’ mobile app was discussed.

Symptoms of interstitial cystitis, aka chronic bladder pain or pelvic pain, include chronic urgency, frequency and bladder discomfort & pain. Symptoms can be frequent but unpredictable, so tracking bladder function & symptoms, and analyzing factors that may influence them is extremely important for patients and their care providers. The Bladder Pal App, created by a doctor at Dartmouth Medical School, is available in both the Apple and Android Stores. See the Interstitial Cystitis Association Facebook page (May 22 post) to review comments on this app, and while you’re there check out  the discussion of whether physical activity helps with symptoms.


Worries About Recruiting Criteria for Mt Sinai ME/CFS Study

Re: “Mt Sinai ME/CFS Center to Recruit for ‘Mega Study’ Soon” 

Post Exertion Malaise. Most of the people I know who have ME (members of support groups) are far too ill to undergo any kind of test. I do hope that you will take into account that the only possible ME sufferers you use in your studies will only have a very mild form of ME and the results of your studies cannot automatically be extended to cover those with severe and very severe ME. – S

Only Patients with Canadian Consensus Need Apply! Please do not choose people who are a little down-in-the-dumps, or are a bit fatigued for these tests; those who will benefit from exercise (GET) because their body has the ability to produce feel good, pain-killing endorphins. Find the people who are truly sick with ME/CFS who have the Canadian Consensus Criteria for ME/CFS, which makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, circulatory, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria. – L

Definitions Count. Please don’t waste your time with the Fukuda definition. Research shows it misdiagnoses 40%. – C


Sleep Rules “For the Rest of Us”

In one of her “Turning Straw Into Gold” blog posts for Psychology Today, Toni Bernhard, JD, wrote, “Not a week goes by without an article on good sleep hygiene showing up during my Internet wanderings. I know the recommendations are good ones. It’s just that most of them don’t work for those of us who are living with chronic pain or illness. Actually, it’s more than the fact that they don’t work – they’re irrelevant to the life we must lead.” See “Sleep Hygiene for the Rest of Us.” 

(Toni wrote the very popular book, How to Be Sick: A buddhist-Inspired Guide for the Chronically Ill and Their Caregivers.)


Three Wishes for People with ME/CFS?

Re: Video: 3 wishes – changes for people with ME & CFS  

Name change. And more respect from doctors. – G

The name. Change the name to something more medical and it will make a world of difference. – C

Agreed. The name must be changed. That has to be a priority. – P


CFIDS Foundation Funds Study of Marine Microbe Infection

On May 29, Gail Kansky, president of the National CFIDS Foundation, announced that the Foundation has awarded a research grant to Grieg Steward, PhD to help fund his study, titled “Testing for the presence of vibrio bacteria in clinical samples from CFIDS patients.” Dr.  Steward, an expert in marine viruses and bacteria at the University of Hawaii, will receive $31,166 to complete this research. In the past, presence of ciguatera infection was found in ME/CFS patients, and the Foundation has noted that a number of CFIDS patients report their illness onset followed consumption of shelfish/oysters. Oysters, mussels, and other shellfish may confer vibrio infection if not sufficiently cooked, with potentially severe illness.

This study will use the latest PCR technology to look for the gram-negative, rod shaped bacteria in CFIDS patients. The Foundation has invested $1 million in selected research to date, says Kansky.


Michigan Support Group Leader to Testify at CFSAC Meet (June 13-14)

On May 31, Lori Kroger, president of CFS Solutions of West Michigan, posted in their Facebook page:

“I’m going to DC to give public comment at CFSAC about the urgent importance of provider education. A few weeks ago some people stumbled on a forum of nurses who were making crude remarks. The cruelest were aimed at children and their mothers.

If you developed CFS as an adolescent or have a child with CFS and have been verbally bullied by a nurse, doctor or anyone in health care, please let me know here [] or in a private message. I want to provide some quotes to show the mindset towards CFS. – Lori Chapo Kroger.

Information about the Chronic Fatigue Syndrome Advisory Committee meeting and testimony in Washington, DC, June 13-14, is provided by the Federal Register here.  


Centers for Physician Education in Pain Treatment Established at 11 Universities

The National Institutes of Health has selected 11 health professional schools to be Centers of Excellence in Pain Education. They will be hubs in a coordinated national network to help fill the gaps in pain treatment education for clinicians in all fields. The 11 university centers are at:

• University of Alabama at Birmingham
• University of California, San Francisco
• Harvard School of Dental Medicine, Boston
• Southern Illinois University, Edwardsville
• Thomas Jefferson University School of Medicine, Philadelphia
• University of Maryland, Baltimore
• University of Pennsylvania Perelman School of Medicine, Philadelphia
• University of Pittsburgh
• University of Rochester, N.Y.
• University of New Mexico, Albuquerque
• University of Washington, Seattle


Response to the Fibro & Family Impact Survey Broke All Records

Re: “Fibromyalgia and Family Impact Survey” (closed June 5, 2012)

The number of FM patient responses to the Fibro & Family Impact Survey had already more than doubled all past FM survey records last week, at 5,850, and we should learn soon what the final tally was. Congratulations to survey creators Karen Lee Richards and Dawn Marcus, MD, for their hard work to develop a wealth of new FM data and insights. Once the survey results have been tabulated and reviewed, they will be published in a journal article, and no doubt cited in others to come.


Medical Specialists Generally Shun Nutritional Solutions, But They Can Help

Re: Should Rheumatologists Be Treating Fibromyalgia? And If Not, Then Who? 

Rheumatologist is most logical at the moment. Even when FM is not a symptom of ME (which it is often) it is a multi system illness. Most people with Fm have mitochondrial myopathy, immunological dysfunction in nervous system as well as other systems, digestive tract imbalances as well as neurological disturbances. Currently I would not feel confident with any Medical Specialty, because of lack of knowledge, bias and a tendency to use duloxetine in treatment. Medical Practitioners generally are out of date and not willing to (fearful?) consider nutritional (nutraceutical) solutions, and are rarely able to work with the patient to find solutions (dictatorial).

My current status is about 85% normal function after 15 years of ME with FM and complete disability, on the following treatment:
– acetyl carnitine 500mg TD
– CoQ10 200mg TD
– methyl cobalamine 3mg TD
– folinic acid 800mcg TD
– magnesium citrate 200mg TD
– vitamin D 120 mcg TD
– vitamin K2 (K4+_K7) 100mcg TD
– curcumin 10mg TD
– vitamin P (PQQ) 10mg BD

It took:
– Six weeks to establish normal energy (startling compared to what I was)
– Four months to eliminate all bi-lateral pain (with the exception of pain in wrists)
– At three months I began a more vigorous exercise plan
– Currently I have no diarrhea, much better cognition, no tremor and better balance and gait.
– I am working every day 10 am to 5 pm

I would be interested to hear from others who have used this regime, successfully or otherwise for either FM or ME or both. – I


Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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