Phoenix Rising Articles

Here in the UK the ME community is struggling, nearly 3 years later, to get local and regional ICB’s to implement the new guideline from NICE which was issued in October 2021. It is quite clear that the medical establishment in the UK still does not take the education of health professionals about ME seriously. I speak to medical students at my local university on a regular basis and none have had any training about ME never mind the fact that many have not even heard of our illness.

The coroner’s inquest into the tragic death of Maeve Boothby O’Neill from ME, at the young age of 27, has further revealed the many failings of the NHS when it comes to the treatment and care of people with severe ME. Lack of education of health professionals regarding the understanding and treatment of ME stood out like a sore thumb.

To compound matters, here in the UK there is a derisory amount of...

Can you tell us about your journeys that led to you becoming ME advocates?

EGL: We are both carers to partners with Very Severe ME (resulting from Long Covid in 2022), and Karen has ME herself. It’s a lonely existence and in May we were both hanging out on Twitter (now X) sharing thoughts and ideas about the situation. We got chatting and became friends. We still haven’t met in person but we exchange countless messages every day. Karen is the reason I don’t feel so lonely any more! When the election was announced, about a week later, Karen had the idea to get ready to raise the issue of the lack of NHS care for people with ME and Long Covid with the new Labour government...

Just before Xmas 2010 I was overcome by a bout of Swine Flu. After the holiday, which was a complete blur due to sickness, I went back to work in January feeling very weak. Over the course of the next 8 months, up until my diagnosis of ME, I was afflicted by a bewildering variety of symptoms which caused a great deal of physical and mental suffering. The symptoms which affected me the most in some respects were the unrefreshing sleep and acute insomnia which made me fear that I would lose my job. I was working over 50 hours a week in a very stressful and physically demanding job which I increasingly struggled to keep onto partly due to the lack of sleep/unrefreshing sleep. I noticed a considerable decline in my ability to do some of the basics of my job as I struggled to concentrate and felt increasingly unable to keep up with the very demanding target driven regime at work. Trying to teach a class of 30 teenagers can be hard work at the best of times but when you’re getting 4...

by
Bronc

During November of 2023 the UK government issued a five year suicide prevention strategy. This stated that
there is plenty of evidence to suggest that there are several communities who are at much higher risk of suicide than the rest of the general population. The five year anti suicide strategy has a particular focus on those at risk groups.

People with ME belong to one of those communities yet there is no recognition of this in the 'new' guideline for ME which has issued by the National Institute of Clinical Excellence (NICE) nor in the Department of Health's recent consultation for improving services/quality of life for pwME.

There is a body of evidence to suggest that people with Myalgic Encephalomyelitis (ME) are one of those highly vulnerable groups. For example, in the UK a 2016 Lancet paper noted that, ‘our findings show a substantial increase in mortality from suicide. This highlights the need for clinicians to be aware of the increased risk of completed...

May 12, 2023 Is International ME/CFS Awareness Day​

This year marks 31 years since Thomas Hennessy, Jr. decided that May 12th would be our ME/CFS International Awareness Day. May 12th had been the birthday of army nurse and Red Cross founder Florence Nightingale. After the significant contributions she’d made to the world, she lived with a chronic illness for the last half century of her life.

In 1992, Hennessy decided that Florence Nightingale was the perfect historical hero for our International Awareness Day.
ME/CFS has never really been a big media draw. Even after all this time, mentions of this condition are few and far between in mainstream news. And unfortunately, not everything you read or hear about ME/CFS is accurate. Until recent years, we had few advocates and...

Dr. Nina Muirhead: ME Patient and Advocate in the UK​

By Bronc​

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Dr. Nina Muirhead is a dermatology surgeon and founding member of Doctors for ME in the UK. Since developing ME in 2016 she has done a lot to promote awareness of the disease writing and speaking to various health bodies across the world including a presentation shown at the 71st World Health Assembly.

She is Chair of the CFS/ME Research Collaborative (CMRC) Medical Education Working Group and a member of the Forward ME group of UK ME charities.

In the UK there are no training course on ME for health professionals. Dr. Muirhead has developed a free online training course on ME...

by Bronc

I first fell ill with terrible fatigue-like symptoms in the summer of 2010. Besides the bone-crushing fatigue, I felt fearful, confused, perplexed and demoralised by this mysterious illness that had reduced me from feeling like Iron Man to feeling like a breeze could blow me over.

Now it's 12 years on and at times I still feel confused, perplexed and demoralised by the neurological illness that has turned my life upside down. As the weeks, months and years flash by with no prospect of treatments for my illness, the...

By Bronc and Eric Pyrrhus

For many decades now, people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) across the world have had to deal with medical establishments wedded to inaccurate scientific dogma regarding their illness. Alongside this, there has been a disastrous lack of funding for biomedical research into the illness.

Thankfully, there is a growing body of open-minded scientists who have challenged the dogma and are engaged in research designed to find the causes, discover a reliable biomarker, and develop...

In the last of a three-part series, people with neuroimmune diseases in Mexico speak up about the wide-ranging consequences of the disease on their life. If you haven’t already read the first part of this series, click here.
By Eric Pyrrhus

"There's so many mysterious or surprising variables in chronic illness," comments 35-year-old María...

By Eric Pyrrhus


César Medina climbed mountains, lifted weights, and was an avid cyclist. He had a good job. He had a partner.

But everything changed in November 2020, thanks to an...

By Bronc

In the world we live in people are suffering from all kinds of illnesses, which require a variety of different medications to treat them.

Often, the road to finding a novel medication for a particular illness can take many years, as the money for medical trials usually comes from drug companies who have to spend large amounts of money on research and then conduct the different stages of medical trials to ascertain efficacy and safety.

In the myalgic encephalomyelitis (ME) community, we have faced decades of neglect from the medical establishment, who have not put the requisite sums into research. Sadly, it would appear that none of the big drug companies have taken any interest into conducting...

By Bronc
People living with myalgic encephalomyelitis/ chronic fatigue syndrome...

By Bronc

Dr. Amy Proal, of the PolyBio Research Foundation, is a microbiologist interested in the molecular mechanisms by which bacterial, fungal and viral pathogens dysregulate human gene expression, immunity and metabolism.

She is especially interested in how dysfunction of the human microbiome and/or the human virome can contribute to chronic inflammatory disease processes. We sat down with Dr. Amy Proal to learn more, and the following is an edited excerpt of our discussion.

...

In the second of a three-part series, people describe the challenges of pursuing fundamental rights for patients with neuroimmune diseases in Mexico. If you haven’t already read the first part of this series, click here.

by Jody Smith

May 12th is a special day in the ME/CFS community. It was English army nurse Florence Nightingale's birthday. In 1992 Thomas Hennessy, Jr. thought her birthday would be a fitting day for raising awareness for us.

Why, you ask? Because Florence Nightingale was amazing. Not only did she help to create the Red Cross, and start the first school of nursing in the world. She did all this despite contracting a chronic illness which left her bedridden for the last 50 years of her life.

What an icon she is! She was a combination of frailty and fragility, undergirded by a steely will to make a difference and ease suffering in our infirm world. Her birthday was the perfect date for Thomas Hennessy to issue our call to arms about ME/CFS.

Thomas first sent out his battle cry 30 years ago this week. And...

In the first of a three-part series, people describe the challenges of living with neuroimmune diseases in Mexico. The science of these diseases is also discussed, and we try to understand why the latest science is not informing proper medical treatment.

By Bronc

It was a warm summer evening and I was looking forward to watching one of my favourite films, when I received a text from my best friend.

I expected the text to be a question asking me what film I was going to watch. Instead, he informed me that the night before he had attempted to kill himself.

The next day, when we met, he explained that he could not endure his suffering anymore and that is why he made the suicide attempt. Now my dear friend, whom I loved as a brother, was just one amongst many other tragic stories.

There is plenty of evidence to suggest that there are several communities who...

By Bronc

Late last year Dr. Dane Cook, along with Dr. Jacob Lindheimer and colleagues, published a systematic review of research looking at pain as a component of post-exertional malaise (PEM) — which is also known as post-exertional symptom exacerbation (PESE).

As seen with other components of PEM/PESE, any pain seemed to be delayed by 8-72 hours after exertion. Interestingly, this finding applied to both myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS) as well as to...

Dr. William Weir is a retired physician who has treated ME/CFS patients for many years. He has spent the last few years advising the U.K. government's National Institute for Health and Care Excellence (NICE) and has recently authored an article about dogma and science. Image courtesy of Dr. William Weir

by Bronc

Dr. William Weir is a retired infectious disease consultant who worked at the Royal Free Hospital in London. He has long been involved in treating myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) patients and has been a consistent critic of the psychological approach to treating ME/CFS.

From 1998 to 2002 Dr. Weir assisted the U.K. government's CFS/ME Working Group, which produced a comprehensive advisory report for the...

Dr. Mark Zinn, along with his late wife Dr. Marcie Zinn, pioneered the use of advanced electro-encephalographic techniques to study myalgic encephalomyelitis. Image courtesy of Dr. Mark Zinn.

by Bronc

Dr. Mark Zinn and his late wife Dr. Marcie Zinn co-founded the NeuroCognitive Research Institute. He has expertise in quantitative and tomographic methods of electro-encephalographic analysis, in order to test theoretical premises in research involving neurocognitive disorders.

From 2011-2014 he served as research consultant at the Stanford University School of Medicine, where he studied cognitive impairment in infection-associated chronic diseases such as myalgic encephalomyelitis (ME).

In 2015, he...