Hot Topics & Readers’ Notes 04-04-12

Could Genome Instability Be the Mechanism Underlying ME/CFS?

Re: “Is overall genome instability cause of ME/CFS? $133K study may help answer that”

Here’s a new idea that the National CFIDS Foundation thinks worthy of a significant investment. Gene investigator Dr. Henry Heng at Wayne State University has specialized in the study of chromosomal changes in disease. He suggests that certain challenges cause some individuals’ genomes to become increasingly unstable, and has found “extremely high levels of chromosomal abnormality” in both cancer and GWI patients.

In GWI he proposes the instability can be caused by “the extreme environment of war,” which “will lead to diverse disease traits that can be characterized as GWI.” He will look for evidence of a similar pattern in ME/CFS patients.


Orthostatic Intolerance & ME/CFS

Re: “Orthostatic Intolerance and Chronic Fatigue Syndrome (ME/CFS)” by Dr. Bell.

Passing out. OMG! This is the truest to form that has ever come close to an explanation for me. It was explained to me that I just had low blood pressure & needed more salt in my diet… I’ve had FM/CFS for 15 years… I’m in Australia & don’t even know if the doctors here would have heard of this testing procedure, but will try to educate & get it done. I don’t see info re a remedy. Can anyone comment? – K

[Note: people with ME/CFS often find added salt and generous fluid intake helpful (as always, with the approval of one’s physician), because perhaps 70% tend to have “extraordinarily” low blood volume, according to Dr. Bell and Dr. David Streeten. As Martha Kilcoyne noted regarding her protocol for improvement, “Under my doctor’s supervision I started to drink a lot of water and I tried to add a gram of salt a day in order to retain fluids and build blood volume naturally. Over time it really paid off.”]

Low BP. I was diagnosed with Fibro in 1997. I started to have episodes of dropping BP when standing or after driving. I had a tilt table test and was diagnosed with Neurally Mediated Hypotension. I was started on Atenolol, a beta blocker normally used to control Hypertension. I was told that this med would block the response from the Central Nervous System that was causing me to pass out. I still have episodes but not as frequently. – F

Unstable blood pressure. I have the ability to walk through the grocery store for hours but I can not stand in line to pay for the items in my cart.… Today, I checked my supine vs. upright for you. Upon awakening my BP was 96 over 67 and heart rate 98. Upon standing it changed to 136/92/89. I feel best lying down and have been in this [situation] for 10 years. I take Midodrine and that allows me to remain upright for 3-4 hours…. – F


Jazz Pianist Keith Jarrett’s Lessons from ME/CFS

Here’s an article by Chicago Tribune reporter Howard Reich on Keith Jarrett’s recently released double-CD “Rio”: “What Happened in Rio.” Part of the reason the performance was so beautiful, Reich recounts, is that “Jarrett – has been through his share of troubles… he was struck by chronic fatigue syndrome in the summer of 1996 and housebound through 1998. When he slowly re-emerged from that extended period of silence…[he was] simultaneously humbled and determined… ‘Play like it’s the last time you will ever play’ suddenly had literal meaning.”


Another Database of ME/CFS Doctors

It’s so hard for people with ME/CFS/FM to find knowledgeable or understanding doctors that all leads are worth investigating. The searchable Co-Cure Listserv’s Good Doctor List is an old standby. But here’s another that might be worth a try, at As with all such databases, there are no guarantees, and be sure to see if any names you find in the list are patient recommended. When we searched on our area we did not find a patient-recommended name, but others may hit paydirt.


New Primary Care Physician CME Course on ME/CFS

March 23 marked the debut of a new CDC/Medscape CME module to help doctors and other healthcare professionals understand, diagnose and manage ME/CFS. Created by Drs. Charles Lapp, Anthony Komaroff and Lucinda Bateman, the module – “Chronic Fatigue Syndrome: The Challenges in Primary Care” – can be completed for CME credits through March 2013. Some have commented that though cognitive behavioral therapy is addressed, it is couched as support for coping rather than as a cure.


‘Clothespin Test’ a Good Way to Teach Chronic Pain Appreciation

Health Central ME/CFS & FM patient expert Karen Lee Richards dug into her archives to share with us a really great idea for communicating the torture of chronic pain to a pain-free audience. It is… the clothespin test. See “An open letter to anyone who has a chronic pain patient in his or her life.”

Dr. Bell’s Thinking on Symptom Variation

Re: “ME/CFS Symptom Variation: Illness or Host?”

Dr. Bell – Brilliant medical thinker and investigator! – E

Excellent article – First, Dr. Bell has seen a cluster event and followed the patients and observed the differences in symptoms first hand. Those of us who have CFIDS/ME and talk to others here with this condition know that not all of us are identical and that no one treatment helps us all. His likening this to Chicken Pox and AIDS helps to make his point in an easy-to-understand manner. What muddies the waters has always been that the infections, which many glom onto to and call the cause, eventually fail the test. Many, but not all of us, have several chronic infections, none of which are likely the “cause” of what ails us. The cluster outbreak in Punta Gorda, FL in the 50’s occured following a govt. spraying “for insects.” No one has ever been able to find out what was in the spray.

So, the debate continues as to whether it is one pathogen or exposure to a toxin which causes all cases of CFIDS/ME or whether various events can bring on this illness. I agree with him that CFIDS/ME is one illness and he made his point well… – M


Conveying ME/CFS Impact Effectively to MDs

Re: “How to Help Your Doctor Understand ME/CFs Disability; The Difference Between Activity Limitation and Fatigue”

Article review: FIVE STARS – This doctor posits that if we quantify our fatigue it will help our physician understand CFS. Not only does he provide sound reasoning, he also shows HOW TO make this method work with numbers and charts. I plan to print this out and begin keeping track of my numbers as this article suggests. – L

Debilitating weakness as opposed to fatigue – I have both ME and FM/MPS complex, etc. and have never used the term “fatigue” to describe how I feel as it’s not technically very accurate. What most of us feel is a debilitating weakness like someone is gradually poisoning us – a “sickly weakness” if you will. Fatigue/tiredness involve most other chronic illnesses. I find that I also garner more respect as a patient when I don’t use the words “fatigue” or “tired.”

…I agree that one should be more specific as to the “degree” of their abilities to perform certain activities. It’s difficult for a physician (even for some of the best) to determine if the “fatigue” is illness-related or from being over-worked…or due to a minor and very easily treatable condition like possible anemia, etc….  Hence, one of the reasons I’m not a fan of the inaccurate, misleading and completely insulting names CFS and CFIDS. I always enjoy Dr. Bell’s take on all things ME and FM. I wish more doctors had his knowledge and compassion. Thank you, Dr. Bell! – B


Speak Up About ME’s Empty Chairs Project – Apr 10-11 CFSAC Meet in DC

Speak Up About ME, an organization especially interested in empowering younger people with ME/CFS and their families, has created a new blog explaining their plan to revive the “Empty Chairs Project” for the Spring 2012 CFSAC (CFS Advisory Committee) meeting in Washington, DC, May 10 and 11. (See Federal Register announcement HERE.

To learn about this organization and how you or your group or family can claim those empty chairs in Washington, go to


Trial Tests Green Tea EGCG as Nontoxic, Flu Fighting Hand-Wash

Re: “Evaluation of the Antiviral Activity of a Green Tea Solution as a Hand-Wash Disinfectant”

In this report, published Mar 7, 2012, the researchers explain they conducted this study because “a green tea extract has been shown to have inhibitory effects” on a long list of viruses from influenza to Epstein-Barr and herpes virus. Their conclusion: “The infectivity of the virus on the skin cell layer became obsolete when washed with the green tea solution. The skin contact model could be applied to develop non-pharmaceutical intervention measures for reducing human transmission of the influenza virus.”


Living with Pain? Add Your Input to the American Pain Foundation Survey

The APF wants your views on what you believe would best help you obtain support in coping with chronic pain. Complete their Get Involved survey ( by April 6 and they will get back to you soon with a report on the survey results.


CFIDS Association Cognition & CFS Webinar: Register Now

On Wed, April 11 at 2:00 pm Eastern the CFIDS Association of America will be hosting a free webinar discussing cognitive problems (memory, concentration, etc.) with CFS and fibromyalgia. Preregister at to submit questions and listen (


Note: This information has not been reviewed by the FDA 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 with your professional healthcare team.

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2 thoughts on “Hot Topics & Readers’ Notes 04-04-12”

  1. AuntTammie says:

    The Dr listed for my town is the WORST DR I have ever gone to…..she literally got mad at me for being allergic to the meds she suggested, when I told her that I have always loved exercise (used to run marathons among many others things)but had to recently stop doing some of the previous forms of it, because it was making me significantly worse, she pushed me to keep doing it and to increase it (and she did so in a manner that clearly said that she did not believe me), and she was just generally very rude and very late for the appt……oh and the exercise and drugs were the only things she suggested at all.

    Her name is Dr Gogoneatta….hopefully the other Drs listed are not as bad, but if that is any indication, I wouldn’t go with anyone on there.

    1. evilgalblues says:

      On the second site, one of the doctors for GA, Dr Cohen, doesn’t believe FM is a real disease but there he is, listed as a resource for people seeking help. How can he be a good doctor if he doesn’t believe your disease is real?

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