Saturday, 23 November 2019

Low-dose naltrexone in the treatment of myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)

Olli Polo, Pia Pesonen & Essi Tuominen


Background: Myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS) is a common medical condition that limits physical and cognitive functions, with no known effective medical treatment.

Methods: We report on the safety and effectiveness data accumulated in clinical practice when treating ME/CFS with low-dose naltrexone (LDN, 3.0 – 4.5 mg/day). The medical records from 218 patients who received ar diagnosis of ME/CFS and LDN treatment during 2010–2014 were retrospectively analyzed.

Results: Outcome data were available in 92.2% of patients with an average follow-up time of 1.7 years. A positive treatment response to LDN was reported by 73.9% of the patients. Most patients experienced improved vigilance/alertness and improved physical and cognitive performance. Some patients reported less pain and fever, while 18.3% of patients did not report any treatment response to LDN. Mild adverse effects (insomnia, nausea) were common at the beginning of the treatment. Neither severe adverse effects nor long-term adverse symptoms were reported.

Conclusions: The high frequency of treatment response and good safety profile observed in this retrospective open label study could prompt prospective controlled studies to confirm the feasibility of LDN in alleviating ME/CFS symptoms.

Monday, 18 November 2019

Tri-Valley Hero: Vidhima Shetty, sharing others' stories

Teen author, journalist from San Ramon receives Rising Star award

by Dolores Fox Ciardelli

Vidhima Shetty, 18, made a name for herself locally with her dogged pursuit to help sufferers of chronic fatigue syndrome.

When she was attending California High School in San Ramon, she became aware of the plight of an afflicted young man in her neighborhood, talked to his family and learned more about the disease. She published an article about it in her school paper, The Californian.

"This disease affects 1.5 million to 2 million people in the United States, but it is not very well-known," Shetty said.

The disease is also known as myalgic encephalomyelitis (ME), which means a neuro inflammation of the brain and the spine.

Shetty said after her story went online, she was surprised by a barrage of emails from people coping with the illness. Compounding the suffering, patients have to deal with people who do not understand it.

"I started getting comments from all over the world, thankful that someone who doesn't have the disease went out of the way to write about it," Shetty said.

In response to the interest, Shetty expanded her research, sought help from medical professionals to review her findings, and last year published a 122-page book, "An Adolescent's Guide to ME/CFS." She donates proceeds to the Open Medicine Foundation, which is doing research to find a cure.

Shetty targeted young people because ME/CFS is the most common reason adolescents are out of school for long periods of time, according to Linda Tannenbaum, CEO of Open Medicine Foundation.

"It's not diagnosed easily so most parents and kids don't know they have it," Tannenbaum told Shetty. "And a lot of people think that the kids are lazy, that they don't want to study, or have a hard time concentrating because they don't try hard enough."

Shetty, the Tri-Valley Hero in the Rising Star category, is now a freshman at Columbia University, which has been a great adventure for her.

"This is my first time ever coming to the East Coast," she said. "I feel like it is definitely a good learning experience."

Many of her new friends hail from other countries so at least she is familiar with life in the United States, she added with a laugh. Shetty said that as she and other new students talk about their interests, she is sure to educate them about CFS.

"It's great to see how they react," she said.

She is majoring in English and economics, suggested by her adviser since Columbia does not have an undergraduate major in journalism. One of the first extracurricular activities Shetty applied for was the school newspaper, the Columbia Spectator, which publishes in print once a week and online daily.

"It's wonderful because it's all student-run and student-led," she said. "You're a trainee for six weeks, then you have to apply to be a staff writer."

Shetty said the atmosphere and rigor of Cal High prepared her for college.

"If anything, I feel like at college the classes aren't so often, so although they are a little bit harder, you have more time to manage your work," she noted.

Despite her whirlwind life in New York, Shetty keeps abreast of research on chronic fatigue syndrome.

"I am still settling in but I know at Columbia there are professors specifically interested in CFS," she said. "I want to reach out to them and get to know, in terms of their research, what they are focusing on."

She plans to update her book as breakthroughs are made.

"I keep in contact with all of the patients I have interviewed," Shetty said. "When you connect with a patient, I don't feel it's something you can ever let go."

Shetty said the Hero award means a lot to her because it helps with her CFS efforts.

"It is a testament to what I want to continue to do," she said. "I hope that through word of mouth people will understand what this disease is, and I hope to raise enough awareness to find a cure and help this community."

"One of the best days of my life will be when we find a cure," she added.

Tuesday, 12 November 2019

Altered cardiac autonomic regulation 

From the ME Research UK website – 

Published in the journal, Medicine, last month was a systematic review looking at “evidence of altered cardiac autonomic regulation in ME/CFS”.

Simply put, “cardiac autonomic regulation” refers to the body’s control system that acts unconsciously to regulate the functions of the heart such as heart rate. This has been a recurring topic in projects funded by ME Research UK, and several of the studies referenced in this new review are from research supported by the charity, including those involving Prof. Julia Newton (Aug 2007, Apr 2009 and Aug 2011) and Prof. Jo Nijs.

The review included 64 publications looking at a number of different measurements in people with ME/CFS and healthy control subjects, including resting heart rate, maximal heart rate during exercise, heart-rate response to head-up tilt testing, and resting heart-rate variability.

A meta-analysis combining the results of multiple studies found that these parameters and more were significantly abnormal in ME/CFS patients compared with controls, indicating that the illness is associated with altered autonomic cardiac function. Although the differences were not sufficiently consistent for any of these parameters to be useful on their own for diagnosis.

These findings are not news if you have been following ME Research UK-funded studies over the last few years, but it is good to see the conclusions confirmed in a meta-analysis that includes results from many other researchers.

Thursday, 7 November 2019

Omnipotent Lord, my Saviour and King

It’s a while since I posted a hymn; I haven’t done this one before. You can listen to it being sung by clicking here

Omnipotent Lord, my Saviour and King,
Thy succour afford, Thy righteousness bring:
Thy promises bind Thee compassion to have;
O, now let me find Thee almighty to save.

Rejoicing in hope, and patient in grief,
To Thee I look up for certain relief;
I shall be supported, no danger I’ll fear,
Nor shrink from the trial, while Thou, Lord, art near.

Yes, God is above men, devils, and sin,
My Saviour’s great love the battle shall win;
So awesome and glorious His coming shall be,
His love all-victorious shall conquer for me.

He all shall break through; His Truth and His grace
Shall bring me into the plentiful place,
Through much tribulation, through water and fire,
Through floods of temptation and flames of desire.

On Jesus, my power, till then I rely,
All evil before His presence shall fly;
When I have my Saviour, my sin shall depart,
And Jesus for ever shall reign in my heart.

Charles Wesley, 1707-88

Saturday, 2 November 2019

WE ME - a Community and ME 

A new booklet from Invest in ME Research – 

A condition such as ME presents not only a challenge to the patient who receives the diagnosis, nor only to the family where a child or partner contracts the illness. It tests the values and the fabric of a community. How does the community react?

The reactions and experiences describe how prepared or willing it is to overcome the challenges and support the patient with ME.

A condition such as ME presents not only a challenge to the patient who receives the diagnosis, nor only to the family where a child or partner contracts the illness.

Thanks to funding from an Awards for All grant Invest in ME Research have been able to have printed a small booklet that the team has produced giving an overview of how ME affects a community.

The booklet can be downloaded as a pdf file by clicking here.

From page 3 – 

What is ME?

ME is a multisystem, complex, acquired illness with symptoms related mainly to the dysfunction of the brain, gastro-intestinal, immune, endocrine and cardiac systems. ME has been classified as a neurological disorder in the World Health Organisation's International Classification of Diseases since 1969.

The Chief Medical Officer's Report issued in January 2002, recognised that ME "should be classed as a chronic condition with long term effects on health, alongside other illnesses such as multiple sclerosis and motor neurone disease”. Similarly the Institute of Medicine report of 2015 stated that ME is “a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”