Update letter to Invisible ME participants August 2020.
On Sunday the 26th July the writer Jemma Kennedy wrote a moving article for the Observer/Guardian newspaper about her lack of recovery from the C-19 illness. She made important links between her experience and that of ‘our first cousins’, people living with ME/CFS and the devastating impact of that condition on their lives. You can see the article here:
In response we wrote a letter to the Observer/Guardian highlighting the points Jemma made i.e. the issues of lack of cure, diagnosis, treatment and disbelief faced by people with ME/CFS and we expressed the hope that the increase in the number of people displaying Post Viral Syndrome following C-19 might lead to great understanding and awareness of the reality of ME/CFS. We are pleased to say the Observer published our letter (see below) in their letters section on Sunday 2nd August. We are attaching a copy of the letter with this e-mail for you to read.
On related issues we are now hoping our new play about ME/CFS will be undertaking a pilot tour in March 2021. This of course depends on the state of play regarding C-19 and the ever changing rules on lockdown. Preparations are well underway for the exhibition and we plan now for that to be available before Christmas. Tanya Morel’s series of supporting pictures are very powerful and also humorous, which we hope will encourage people to look further at the content.
Love and best wishes to you all and do remember we are still here if you would like to call us or get in touch.
David and Hilary
In her excellent article, ‘I’m a Covid-19 long hauler’ (26th July) Jemma Kennedy writes movingly about her ongoing symptoms following the illness and makes connections with the experience of ‘our first cousins’ whose lives have been devastated by the much misunderstood illness ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). This condition profoundly affects the health and lives of sufferers for many months, years or decades.
Jemma identifies the profound challenges of people living with ME/CFS, for example, in gaining a diagnosis, the lack of an evidenced base treatment, and, most significantly, the disbelief – even within families and sometimes the medical profession. This latter can lead to isolation and despair.
There are several reports now documenting how some patients with Covid-19 have developed symptoms of Post Viral Fatigue Syndrome and have been unable to return to their normal health. These symptoms resemble those experienced with ME/CFS and it is expected that there will be a rise in cases of ME/CFS following the pandemic.
Covid-!9 has been an unrelenting nightmare for too many people but if we emerge form the experience with a greater openness, compassion and understanding for people living with related ‘hidden’ illnesses such as ME/CFS then that would be a silver lining, a glimmer of hope for the 250,000 people who live with the condition in the UK.
Dr Hilary Doe
An ambitious genetic study into ME/CFS has received 3.2 million pounds from the Medical Research council and the National Institute for Health Research. Researchers will be collecting samples from 20,000 people. The aim is to develop diagnostic tests and targeted treatments by identifying differences in people’s DNA that may affect their risk of developing ME/CFS and reveal underlying causes. Lead researcher Prof Chris Ponting said, ‘we hope to transform ME/CFS research by injecting much needed robust evidence into the field’.
This article in today’s Guardian summarises the project:
You can offer to volunteer for the project by signing in on the project web-site:
The project is exciting as it may help to identify and uncover the biological root of ME/CFS. Let’s support it!
This poem was sent to us by a participant in the network.
What if you thought of it
as the Jews consider the Sabbath—
the most sacred of times?
Cease from travel.
Cease from buying and selling.
Give up, just for now,
on trying to make the world
different than it is.
Sing. Pray. Touch only those
to whom you commit your life.
And when your body has become still,
reach out with your heart.
Know that we are connected
in ways that are terrifying and beautiful.
(You could hardly deny it now.)
Know that our lives
are in one another’s hands.
(Surely, that has come clear.)
Do not reach out your hands.
Reach out your heart.
Reach out your words.
Reach out all the tendrils
of compassion that move, invisibly,
where we cannot touch.
Promise this world your love–
for better or for worse,
in sickness and in health,
so long as we all shall live.
This is a poem written by a member of the Invisible ME network who wishes to remain anonymous:
shall I be angry or shall I cry
child of mine
such weary exhaustion
every muscle aches
waves of nausea
you struggle to nourish your self
I see you shielding eyes from bright light
you keep curtains drawn
so weary at 15… I want to cry
too tired with helping you
like a frail old person
you creep slowly up the stairs
friends too great an effort
you become shielded, guarded
and your own intense energy has hidden itself
waiting hoping longing
it takes a long time
you learn through sorrow
to listen to the emotion of your body
and muscles of body knowing
desire slowly emerges
and I still want to cry for those years
hard times of lonely aloneness for us both
It has left you deeply aware
life is very precious and can be precarious
breath in and breath out
We asked for ideas about what it is like to have ME/CFS: This is D’s response:
Remember what it’s like to have Flu? Man-Flu in particular (an especially aggressive variant, and DEFINITELY a real thing). Your tongue feels like it’s made of carpet, your body temperature fluctuates uncontrollably and your head is full of some sort of low-grade cement? Your taste buds function only in so much as to make everything you consume taste like recycled cardboard, your ears are apparently full of fibre glass and you have the ghostly pallor of someone who’s spent 6 months living in a box in an arctic forest? Your limbs ache, you can barely form a coherent sentence and worst of all, you have such inexorable fatigue that a trip to the bathroom feels like the final approach to the summit of Everest.
Remember that illness? Maybe it wasn’t Flu. Perhaps it was Mumps, Glandular Fever or Pneumonia. Possibly you were recovering from a bout of surgery, with all the attendant post-operative aches and pains?
Now try and imagine that instead of this unhappy state of mind and body dissipating after a week or two, the fatigue stays with you. Often, and unpredictably, some of the other symptoms also spontaneously reappear. Some mornings, you struggle to put words together. A journey upstairs leaves you breathless and bewildered. You read the same page of a book 6 times before you realise it hasn’t gone in, and after 15 minutes focusing on something as simple as reading, your daily reserves of mental energy are completely exhausted. A brief stroll to the shops, or perhaps a walk to the park with your children or grandchildren FEELS like the natural thing to do, but once the endorphins wear off, even these modest achievements might entail a day or more in bed recovering from the sheer tiredness precipitated, along with all of the attendant aches and pains outlined above. Headaches come and go; appetite fluctuates, and sometimes for no discernible reason mealtimes swiftly result in the worst exigencies of Irritable Bowel Syndrome (a condition that sounds amusing until you’ve experienced it).
And this goes on for weeks, months, years, until understandably the sufferer may begin feeling more than a tad depressed about their situation. Work becomes untenable, as the sheer physical effort of maintaining anything like an alert or professional presence becomes impossible. Social relationships become difficult as the multiplicity of symptoms hold sway. Worst of all, perhaps, imagine that not only are you suffering from such a bewildering and impactful suite of symptoms, but compounding your misery, many of those purportedly empowered to assist you are openly cynical about the provenance of your illness. As there is no singe test for the condition, a differential diagnosis can take literally years to achieve, and even this is contingent on the degree of awareness and understanding exhibited by your General Practitioner. Despite feeling like you’re perpetually wading through treacle, you may be told by these and other professionals that you need to exercise more, or even that the condition is entirely in your head.
Derogatory epithets applied to your illness for years, like “Yuppie Flu”, mean that there is such cynicism abroad in the culture pertaining to your illness that friends and even family may become exasperated and offer little sympathy or understanding, despite clinical studies showing that those experiencing your condition have “…the lowest health-related quality of life score when compared to cancer, diabetes, lupus, stroke, heart disease and chronic renal failure”. Sometimes, faced with this multi-headed Hydra of sickness and disbelief, you may even begin to doubt yourself, compounding the negative emotions already prevalent as you battle through each day to achieve some sort of equilibrium.
Sadly this condition is not some grim fiction, but a lived reality for many of the hundreds of thousands of sufferers battling ME (Myalgic Encephalomyelitis) in the community. Aspects of it have been my reality for some years. It is of the utmost importance to me that ordinary people understand the devastating impact of this very real condition on sufferers, and that professionals, most particularly within the Health, Benefit and Social Care systems, are imbued with sufficient understanding to treat sufferers with the respect they deserve commensurate with the severity of their condition. I remember the personal affirmation I received when I finally felt acknowledged and believed by healthcare professionals; Given the daily struggle outlined above, sometimes battling through life is an overwhelming task in itself, without the additional and enervating prospect of having to convince others, especially when they should know better. Under these circumstances, to quote Joseph Conrad, “The question is not how to get cured, but how to live.” As a cure still looks like a distant prospect, this is the challenge all ME sufferers face, and a major part of the solution is making the invisible, visible.
This is what S. said:
Yesterday I drove 5 miles to the vet with our injured cat because my husband, who has cancer related fatigue, was unable to drive. It was a short visit and I drove straight back. On returning home I went to bed and stayed there resting and sleeping until this morning. This is typical of how my body responds to activity. I can drive only once or occasionally twice a week and then for only very short journeys usually only a couple of miles. I am short rations of energy and can only use it once.
My body like a car sitting on your drive that has the potential to take you anywhere but with only a litre of petrol in the tank each day that can’t be saved to use another day. Friends say “But your car looks fine, it must be capable of going anywhere you want to go. It must be that you don’t really want to go any further.” It is frustrating and distressing to be disbelieved, no-one can see the pain and the widespread prejudice surrounding ME is a cause of isolation and depression. Please bear in mind that scepticism about the condition deflates us like a balloon; we think “Here we go again, I am up against it again.” Trying to explain is extremely tiring and dispiriting . It is not just strangers; even my own family scoffed and called me a benefit fraud.
It is not just my body that is effected, brain fog is a major problem for me. Along with poor balance, too much effort causes tremor. I am over-sensitive to light, sound and smells. Answering questions is difficult for me and I can be slow to respond, so interviews are stressful. When ME hit me nearly 20 years ago felt as if old-age had come to meet me, at the age of 46 my active life was largely over and that is how it has been.
THE OPEN MEDICINE FOUNDATION
The Open Medicine Foundation ran a poetry competition for which there were many contributions. The winning poem was:
By Laurie Glass
Even though we’re sick, in pain,
and our bodies feel so drained,
we feel the agony unfold,
our lives are put on hold,
we keep our inner strength.
Even though we’ve gone away,
and we’re missing ev’ry day,
we feel we’re on our own,
yet know we aren’t alone,
together we are stronger.
Even though we’ve all been wronged,
we’ve been ignored for oh, so long,
for years we’ve been denied,
our needs were set aside,
we are grateful things are changing.
Even though we’ve been unheard,
others help us spread the word,
together we’re unstoppable,
we’re making changes possible.
We’ll never stop trying.
Even though we are in tears,
grieve the loss of many years,
experts work on our behalf,
to try to get us back.
We’re grateful for each one.
Even though our hearts are breakin’,
even though our lives were taken,
we try to keep on dreaming,
we try to keep believing
that better days will come.
The poem was made into a song ‘Keeping the Hope’ by Maxwell Elefant and 95 North. You can find it here: