A Song for ME /CFS – Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One

The article below is taken from the Canary and written by Steve Topple. Thankyou Steve. The illness ME /CFS  (Myalgic encephalomyelitis/chronic fatigue syndrome) not only is the illness of a thousand (inadequate) names, but there is also very little public recognition of the condition which can be devastating.

The article and particularly the song is so moving, beautiful yet haunting that I have felt compelled to reblog it. I break my rule about only posting about child sexual abuse.

I have suffered from ME /CFS for several years, relatively mildly compared to many. Most of the time I am not bedridden and can walk several hundred yards. Symptoms though are variable from day to day. Also going over (a hidden and changeable) cliff of using too much energy leads to muscle pain, brain fog, headaches, having to lie down, perhaps for several days.

I believe the illness is caused by some defect in the energy production process and mitochondria. The best book I have found is  Sarah Myhill Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis: It’s Mitochondria, Not Hypochondria [3] 

See also my only other post that I have mentioned CFS  Lack of Blogging [4] 

However the illness has been dogged by differing names, differing symptoms, fraudulent research and pure ignorance from those who should know better.

My own doctor told me that I cannot be sleeping properly otherwise I would not be fatigued! They wanted to prescribe sleeping tablets and antidepressants. There is nothing like being in hock to Big Pharma rather than helping your patient or properly researching the disease.

The doctors do have a slight excuse in that the PACE trial was fraudulent [Why?] and so NHS recommended treatments are false and harmful. Not much actual research goes on and not much money is set aside for research. [Why?]

Sufferers are labelled as having a mental problem or moaners.

Are the causes already known but being suppressed for nefarious reasons?

If anyone has been helped by my blog posts over the years I would be grateful if you could spread this or Steve’s article on social media. Thankyou.

Anyhow here is Steve’s article, please visit his site which has all the features intact such as one to read the article to you, so he gets the credit and support. 2018 May 12 The Canary Steve Topple Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One [1]

Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One

A classic song by Bob Dylan has been rearranged and reimagined for a campaign about a disease affecting at least 17 million people worldwide. While it’s a powerful piece of musical activism, the artist behind it and the campaign around it are also awe-inspiring.

ME: chronic and debilitating

Myalgic encephalomyelitis/chronic fatigue syndrome, commonly referred to as ME/CFS or just ME, is a chronic systemic neuroimmune disease. While symptoms vary for every person, people living with it often experience:

• Debilitating fatigue and a worsening of symptoms brought on by physical or mental activities, or both. Often referred to as post-exertional malaise.
• Flu-like symptoms.
• All-over pain.
• Sleep disturbance/problems.
• Cognitive impairments.
• Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
• Hypersensitivity.

Between 17 and 24 million people worldwide are thought to be living with ME; in the UK, it is around 250,000. But the disease has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or ultimately told it’s ‘all in their heads’.

So, the campaign ‘#MillionsMissing‘ was launched to try and address this. In support of the objectives of the campaign, activists and author Robert Saunders, who also writes under the surname McMullen, has taken the Dylan standard Blowin’ in the Wind and turned it into A song for ME. The Canary caught up with Saunders, who has lived with severe ME for 26 years, to discuss the disease, Millions Missing and why Dylan’s message is relevant to the movement.

How many voices…

A song for ME describes what it’s like to be living with the disease. Saunders arranged, produced, and wrote the alternative lyrics to the song, as well as singing lead vocals on it. He also got 18 people living with ME from seven countries to sing on the chorus. Of these, Saunders said that Kaeley Pruitt-Hamm‘s vocal stood out so much he included it throughout the song.

A song for ME says:

How many voices must scream from the dark

Before you take heed of our cry?

The answer my friend

Is blowin’ in the wind;

The answer is blowin’ in the wind.

An accidental activist

Saunders told The Canary that the Millions Missing campaign’s objectives are “hugely important” to him. He is actively involved, saying it is the “sense of comradeship and solidarity” which he enjoys. But moreover he feels that despite his incapacity, he’s “contributing in some way” to things getting better:

Becoming an activist was the last thing I wanted to do. For many years I tried to ignore the politics and focus on other activities. But last year I read one or two things which made me realise how much worse the situation is for people with ME in terms of politics than I had realised. And ever since, I have felt compelled to do what I can to try to help to reverse that situation.

Led by #MEAction, the Millions Missing calls on governments and health bodies to:

• Increase funding for research.
• Carry out more clinical trials.
• Provide better medical education.
• Increase public awareness in relation to ME.

Empowering

The campaign is extremely active online, constantly raising awareness. But for Saunders, Millions Missing is about more than just the objectives. He says that while social media and the internet “do have their negatives”, for him they are a “godsend”:

The campaign and its tools have given me and other people with ME a voice. It’s one that has been missing for too long. People who have been unable to leave their houses, bedrooms or beds for decades are finally being empowered. And now that we are starting to be seen and heard we will not be silenced until our demands for health equality are met.

It’s this which makes Dylan’s song such a pertinent choice in relation to the disease.

A civil rights issue?

Blowin’ in the Wind is viewed by many as a song about the civil rights movement in the US, as much as an anti-war anthem. As Saunders notes, the fight of the ME community is in itself a civil rights movement:

For decades ME patients have been subjected to mistreatment and neglect at the hands of the medical establishment. Progress in understanding has been inhibited by… misconceptions about the illness. But also by the dogmatic beliefs of a vociferous minority of mental health professionals.

I recently watched the film Suffragette and was struck by the parallels between that movement and ours. It was particularly noticeable to me how the suffragettes were smeared and persecuted by the establishment, just as ME campaigners have been.

Drawing parallels

What’s also of note with the ME civil rights movement is how it has drawn parallels with the HIV/AIDS campaigns of the 1980s and 1990s. #MEAction has extensively documented [pdf] how, and why, the HIV/AIDS campaigns were so effective, and what the ME community could learn from it. The group said [pdf, p5] of the HIV/AIDS campaign:

What struck us most was the power of the movement as a whole. The combination of the incredible force of each element and the drive behind every activist resulted in a movement that redefined not just the medical research paradigm, but also our national priorities.

The successes of the HIV/AIDS advocacy movement were the result of a unique moment in time when the illness and death of thousands of people catalysed action…

It also provides hope and shows what is possible even in the face of seemingly insurmountable odds.

Mistakes being made

Saunders believes that by applying this mantra, the ME community will eventually win the fight. But he also believes there are still obstacles to overcome:

When we look back now on the way in which women and HIV/AIDS sufferers were treated, along with people of different ethnicity, sexuality, disability and appearance, it seems utterly perverse. And yet, those same mentalities seem to reappear in different guises in different generations over and over again. Yesterday it was women with multiple sclerosis being diagnosed with ‘female hysteria’. Today it is people with ME. And tomorrow it will be some other undeserving victims of misfortune – unless we can learn from our mistakes.

But, as part two of this article will discuss, medical professionals and others have still not learned from their ‘mistakes’. One of the biggest of those being the notorious PACE trial.

Get Involved!

– Find out more about the Millions Missing campaign.

– Read The Canary‘s analysis of the PACE trial.

Links

[1] 2018 May 12 The Canary Steve Topple Bob Dylan’s ‘Blowin’ in the Wind’ has been re-imagined for the ‘millions missing’: Part One https://www.thecanary.co/feature/2018/05/12/bob-dylans-blowin-in-the-wind-has-been-re-imagined-for-the-millions-missing-part-one/

[2] You Tube A song for ME: Blowin’ in the Wind Lyrics Robert Saunders https://www.youtube.com/watch?v=BncUDXRA1v4

[3] 2017 Jan 25 Amazon Sarah Myhill Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis: It’s Mitochondria, Not Hypochondria https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis/dp/1781610797/ref=sr_1_3?ie=UTF8&qid=1504792861&sr=8-3&keywords=sarah+myhill

[4] 2017 Sept 7 Cathy Fox Blog Lack of Blogging https://cathyfox.wordpress.com/2017/09/07/lack-of-blogging/