Last May I posted about a little boy named Andrew McGorrian in Northern Ireland with severe ME/CFS whose family and friends were trying to raise money for treatment in the United States with Dr. Jamie Deckoff-Jones.
I am happy to report that Andrew, who has been in treatment for a few weeks now, has been improving. After three years of being completely bedridden Andrew is now awake for 9-10 hours a day, instead of 4.
Dr. Jamie reports that he is doing “brilliantly” and that “what has happened so far is very encouraging and bodes well for Andrew to have an improved quality of life going forward, using the gentlest of treatments.”
To read Dr. Jamie’s blogpost click here.
On Saturday May 12 please wear blue and save a blue ribbon to your computer to help raise awareness for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, or purple for Fibromyalgia.
The month of May is ME/CFS and FM Awareness Month, and 2012 marks the 20th anniversary for an International May 12th Awareness Day.
The idea originated with Tom Hennessy, the founder of RESCIND (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases). Mr. Hennessy designated May 12 as the International Awareness Day for the spectrum of illnesses he called Chronic Immunological and Neurological Diseases (CIND).
May 12 was chosen as it corresponded with the birthdate of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross.
Nightingale became chronically ill in her mid-thirties with an ME/CFS-like illness. She spent the last 50 years of her life virtually bedridden. Despite suffering from an incapacitating illness, she managed to found the world’s first School of Nursing.
This determined woman of the late 19th century is a symbol of inspiration and hope to sufferers of these chronic disorders in the late 20th century.
To connect with May 12th International Awareness events click the following links:
Kati says it’s almost time to deliver the petition to the Canadian Minister of Health, so if
you haven’t signed it yet please click here .
Also, don’t forget to share this petition with family and friends on Facebook and other social media.
Here’s a message from the petition organizer, Kati Debelic in Port Moody, British Columbia:
In the light of the Harper government funding 100 million $ for brain research, but mentioning most diseases that would benefit but not ME or fibromyalgia.
And in the light of a recent paper suggesting that Ontario rheumatologists were thinking of dropping fibromyalgia as part of the diseases they treat (they feel GP’s can now take care of them just as well),
I feel that this petition is very relevant to tell the Canadian government that it is not ok to sweep us under the carpet (once more) and to start contributing to international research and start educating our physicians on the severity and the neglect of our illness.
I have been invited to an interview for a radio show called DisRespect (from Hamilton, Ont) and we will mention this petition so I will wait a week or 2 before handing it out to maximize the number of signatures.
Thank you to all for signing and for your efforts in sharing this very important petition.
I received a message on my blog today from Danny McGorrian, in Northern Ireland. Danny is trying to raise funds for a treatment for his younger brother Andrew who has had ME/CFS for 3 years.
Andrew McGorrian contracted a virus and has never been the same since then. He is bedridden and sleeps for 20 hours a day. He’s only 11 years old and is in constant pain.
He can’t really do much and has not been to school for more than a year.
In the UK, the only treatment offered by doctors is Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET). Both of these treatments have been shown to dramatically cause deterioration in ME/CFS sufferers, especially to those who are severely affected like Andrew.
Fortunately, Andrew has found treatment in the United States. Dr Deckoff-Jones, who is well known in the ME/CFS community due to her blog X-RX.net, is having success treating other patients like Andrew.
Treatment for Andrew, however, is going to be expensive. That is why an amazing group of friends of Andrew’s has come together to help him. They call themselves ‘Little Acorns’. Their name refers to the old saying ‘Great oaks from little acorns grow’.
They are hoping not only to help Andrew but other children who suffer from this illness.
Please help raise funds for Andrew’s specialist treatment. A donation can be sent through the Paypal system via the Little Acorns website : click here.
For more information on Andrew McGorrian you can go to the Little Acorns Facebook page or watch this amazing video: .
A recently published study concludes that the amygdala retraining technique may be an effective treatment for ME/CFS and FM.
The Amygdala Retraining program was developed by researcher and therapist, Ashok Gupta. It is based on brain plasticity and employs the power of the mind to heal the body using techniques such as Neuro-Linguistic Programming (NLP). For more information on brain plasticity and NLP click here.
Researchers concluded participants using amygdala retraining demonstrated “statistically significant improvements in scores for physical health, energy, pain, symptom distress, and fatigue” compared with those in standard care.
It’s important to note this is a small study. Of the 44 randomly selected patients only 21 participants completed the study: 7 used amygdala retraining and 14 got standard care.
Despite the “statistically significant improved scores” in patients who were on amygdala retraining, this finding suggests that larger studies are warranted in order to further validate the efficacy of such a technique.
What about you? Have you ever used a brain-training technique to help improve your ME/CFS or FM symptoms?
Finally, a clinical trial with severe ME/CFS patients was published yesterday in PLoS ONE.
It’s a Phase III, double-blind placebo-controlled randomized clinical trial of the TLR-3 Agonist Rintatolimod, also known as Ampligen, in 234 subjects.
The fact that it’s a Phase III means that it will be considered as a scientifically validated treatment option.
Positive findings and very exciting news!
To read the PLoS ONE article click here.
To read about journalist Kelvin Lord’s journey on Ampligen you can go to his blog The New Ampligen Diaries.
The CFIDS Association of America (CAA) was founded in Charlotte, North Carolina in 1987 by Marc Iverson who became abruptly ill with ME/CFS in 1979. Research to discover possible causes and treatments for ME/CFS has been a priority for the CAA.
“Charlotte Talks” is a daily signature talk show hosted by Mike Collins. It’s an NPR news source in Charlotte, NC, and a leading public radio station in the U.S.
On March 1, 2012, Mike Collins talked to CAA President and CEO, Kimberly McClearly, and Scientific Director, Dr. Suzanne Vernon, about where the research stands today.
To listen to the radio interview click here.
For the CAA’s most current information and research click here .