Hot Topics & Readers’ Notes – 12-14-11

Resources for People Needing Disability Assistance in the UK

Here is a website about grants, discounts, aid, legal info, and other resources for the disabled and those who care for them. (Thanks to a mention on the Hunter Hopkins Center Facebook site!) The site is


Unique Knee Arthritis Pain Therapy Trial, All Accomplished Remotely

This is a completely Web-based clinical trial, with web-based recruiting. The FDA-cleared technology (knee wraps with plug-in cord, used for 15 minutes twice a day) will be delivered to your home. Participants must live in CA, VA, FL, CT, IL, or PA. They will be compensated and the trial will last from 8 to 26 weeks. According to the press release from device maker Amp Orthopedics, they are recruiting “adults with mild-to-moderate knee osteoarthritis (OA) to determine the safety and effectiveness of the company’s non-thermal pulsed radio frequency (PRF) technology to ameliorate pain.”

“The Amp technology utilizes a noninvasive, PRF signal which induces an electrical field to create a specific biological effect in tissue by increasing the binding kinetics of intracellular calcium to calmodulin (a first-order signaling molecule), which accelerates calmodulin-dependent biochemical cascades that are involved in tissue repair and regeneration. Electromagnetic field therapy has successfully been utilized for treatment of delayed-union fractures, chronic wounds, and postoperative pain and edema, as well as for the management of knee OA symptoms. A short video animation that describes the trial is available HERE. Patients interested in screening for the study can start HERE.”


UK House Dust Mite Remedy Trial

A pharmaceutical company is recruiting for a trial of a tablet that may immunize against dust mites, a common cause of allergic symptoms. All medicine, clinic visits and travel paid for. According to their call for recruits:

“We are looking for adults who are willing to participate in a clinical trial and are suffering from house dust mite induced asthma. We wish to investigate if allergy vaccination (also known as immunotherapy) with a house dust mite tablet can reduce asthma symptoms and daily intake of asthma controller medication. If you are interested to know more, find out if you’re suitable and complete the enquiry form, …. go to”

News, thanks to Allergy UK (


Video of Dr. Enlander’s Presentation at Mt. Sinai ME/CFS Research Center

On December 7, CFS Patient Advocate Chris Cairnes posted a video of Dr. Derek Enlander’s presentation tying together the research presented Sunday, Nov 20 at the Mount Sinai ME/CFS Research Center kickoff conference. To quote Chris, “Let us hope that this small scale, hard-hitting conference idea becomes a regular practice.”


Coming Soon: Vancouver’s Complex Disease Center for Lyme, ME/CFS, FM & More

A Vancouver Sun article published Dec 6 reports that the clinical research center-to-be has $2 million seed money and a space ready to be occupied in BC Women’s Hospital. After a November 17 meeting, the Complex Disease Clinic’s advisory committee began recruiting for a medical director [see position description & contact info here] and initiated plans for getting patients involved in plans to ensure that the center will both advance the science and be “a welcoming place offering hope, help and shared decisionmaking.”


Dr. Klimas Heading Up New Neuro-Immune Medicine Center in Florida

Dr. Nancy Klimas, formerly director of the University of Miami’s EM Papper Laboratory of Clinical Immunology, will now head up a new research institute associated with another university, according to the announcement she sent Dan Moricoli (host of CFS Knowledge Center’s site and a grateful patient of Dr. Klimas). Dr. Klimas notes: “I have a once in a lifetime opportunity to direct a newly formed Institute at Nova Southeastern University, whose sole purpose is the study of neuroimmune diseases, particularly CFS/ME and Gulf War Illness – the  NSU Institute for Neuro-Immune Medicine.”


Aussie Team Receives $831,000 to Continue Autoimmune CFS Study

Researchers at Bond University Queensland have received a grant of $831,037 in support of their continued research into ME/CFS as stemming from “an abnormal immunological system” – very much in line with the rituximab work in Norway. According to the University’s Dec 8 press release, “This latest grant from the Mason Foundation will allow us to significantly progress our work by conducting a pilot study which could then lead to a drug trial.” Described as the largest-ever collaborative international CFS project, they’re working with researchers at Queensland Health, Stanford University, and Incline Village Medical Center in Nevada (Dr. Daniel Peterson’s Simmaron Research Foundation). Chief investigators are prof Sonya Marshall-Gradisnik (Bond University) and Dr Donald Staines (Queensland Health).


Heartwarming Words From Canada

I want you to know how much I appreciate this site & receiving newsletters from you. I have been dealing with FM & ME/CFS for six years now and the information that you have provided has helped me (and my physician) immensely. Thank you so much. Pleas continue supplying us all with info to help us help ourselves. – P

[Note: In return, we at ProHealth are delighted if we can help our readers.]


UK/Ireland Lyme & Tick-borne Infections Patient Survey

“An independent research group called ‘Lyme Research UK and Ireland’ has undertaken to find out about the experience of people with Lyme [or other tick-borne] disease – in particular their experience of health services. The information will be used to present the case for better health services for patients and enable us to reflect on policy issues.” If you are interested in learning more about the online survey, go to


Free Online Symptom-Grapher Program for Lyme & Other Illnesses

Joanne Drayson highlighted this symptom-tracking program ( on her “Looking at Lyme Disease” blog. (Thank you, Joanne!) It is a free access online tracking program reportedly designed by a Lyme disease sufferer, but relevant for anyone tracking symptoms with a chronic illness or condition.

Users can enter daily 1-to-10 scores for each symptom they want to track (such as headache, bloating, swollen glands, sore throat, shallow breathing, skipping heartbeats, sweats – the whole horrible orchestra). The program instantly plots and displays them on a time-line graph so you can see how you’re doing. It can help you figure out what might be causing up or down trends or spikes – e.g., changes over time that may reflect medications, therapies, diet changes, exercise. And you can share the graphs, findings and questions with your healthcare providers. Just sign up by providing an email address and a password.


Vote TODAY to Win $5,000 for Dr. Peterson’s Research

With just one vote, one time, any registered Facebook user in the world can help win $5,000 in matching funds to go toward the neuroimmune disease research that Dr. Daniel Peterson’s Simmaron foundation is supporting. Thursday, Dec 15 is the last day to vote, so click HERE to help the cause.


Hair Dyes Can Sensitize Users to Other Chemicals and Dyes

Hair dyes can cause straightforward rashes and itches, but also some ‘mystery’ problems, because they can sensitize the user to other chemicals and dyes, such as some found in foods, medications, local anesthetics, and even the widely used PABA preservative used in sunscreens, creams & lotions. There’s more information on dyes and all sorts of other allergens at 


Book Describing 13 Lyme Treatments (Mostly Alternative) Free Online

The book 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies, published in 2009 by Connie Strasheim, is now available for free reading on-line HERE. Each chapter is an interview with a Lyme doctor. The book provides a spectrum of views with a heavy emphasis on ‘alternative’ medicine: from allopathic ‘Western’ medicine to naturopathic (combining mainstream & natural medicine), chiropractic, homeopathic, and energy medicine.


Note: This information has not been evaluated by the FDA. It is generic 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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