8 August is Severe ME Understanding & Remembrance Day.
Severe ME Day was initiated by the 25% M.E. Group, the UK charity that campaigns to raise awareness of ME and provide services to people affected by Severe Myalgic Encephalomyelitis (ME).
It is a day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little or no recognition or help but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability.
8 August is the birthday of the late severe ME patient, Sofia Mirza, who died at the young age of 32 as a result of medical abuse and ignorance. Since her tragic death in 2005, too many ME patients have succumbed to the disease due to ongoing medical negligence. (MEAdvocacy)
Understanding Severe ME may not be straightforward. I want to share some of the stories of people with Severe ME in the hope that the reality of our everyday life may be seen and our silent scream for help will be heard by the healthcare policymakers and leaders. I want them to know how neglected ME is and how desperately ME needs the specialised clinical care provided at their homes.
Voices from the Shadows
‘Voices from the Shadows’ shows the brave and sometimes heartrending stories of five ME patients and their carers, along with input from Dr Nigel Speight, Prof Leonard Jason and Prof Malcolm Hooper. These were filmed and edited between 2009 and 2011, by the brother and mother of an ME patient in the UK. It shows the devastating consequences that occur when patients are disbelieved and the illness is misunderstood. Severe and lasting relapse occurs when patients are given inappropriate psychological or behavioural management: management that ignores the severe amplification of symptoms that can be caused by increased physical or mental activity or exposure to stimuli, and by further infections.
A belief in behavioural and psychological causes, particularly when ME becomes very severe and chronic, following mismanagement, is still taught to medical students and healthcare professionals in the UK. As a consequence, situations similar to those shown in the film continue to occur.
‘Voices from the Shadows’ received its premiere at the prestigious Mill Valley film festival near San Francisco in 2011, where it won the audience award for favourite international doc. The film has been shown in many countries and in different venues – from parliament buildings to cinemas, universities and homes – from the IACFS/ME conference in Ottawa 20011, to the Stanford ME /CFS Symposium 2014.
We consider this film to be unsuitable viewing for children and young people with ME.
Further info at voicesfromtheshadowsfilm.co.uk
One of the patients with Severe ME featured in the Voices from the Shadows is Naomi Whittingham. Naomi has been a quiet yet powerful advocate for Severe ME. Her blog, Life Hidden, invites you to witness life with Severe ME.
Living with Severe ME not only deals with own sufferings but also faces the devastating loss of close friends and loved ones with Severe ME.
I cannot empathise enough how it has been for Naomi when she lost her dear friend from childhood, Emily Collingridge, to Severe ME. She shared openly how Emily was treated by the healthcare system in her blog post, Emily didn’t ‘only’ have ME, which was first published at The Daily Telegraph on 24th June 2013.
Naomi carries Emily’s fighting spirit in Severe M.E. Awareness Day: Emily’s Appeal.
My entire future, and the greatly improved health I so long for, however, currently hinges on luck alone. This is wrong. As I lie here, wishing and hoping and simply trying to survive, I (and the thousands like me – severe ME is not rare) should at least have the comfort of knowing that there are many, many well-funded scientists and doctors who are pulling out all the stops in the quest to find a treatment which may restore my health and that the NHS is doing all possible to care for me as I need to be cared for – but I don’t. This wretched, ugly disease is made all the more so through the scandalous lack of research into its most severe form and the lack of necessary, appropriate support for those suffering from it. This is something that must change.By Emily Collingridge | https://alifehidden.com/2019/08/07/emilys-appeal/
Remembering Australians with Severe ME
Remembering Alison, her mother Christine shared the memory of Alison with ME Australia.
Alison became suddenly ill in 1986 with a high fever, brutal headache and a disturbing myriad of other symptoms. We had no conception of what lay ahead. As the weeks and months passed under “house arrest”, the diagnosis of post viral syndrome offered little comfort – no treatment, no release date. Alison endured 10 years of devastating symptoms with short periods of remission. In 1994 she wrote “I can cope as long as I have hope. I need to feel that my doctors are actively pursuing avenues of help. I have far too much to do to simply defer to Time and Mother Nature”.
The case report on her death gives insights into her debilitating sufferings from a physical condition that should not be treated as a psychological condition.
I would like to share her essay written in 1993. I trust you can also visualise her intelligence and fighting spirit in every sentence of her essay.
Forget M.E. Not
Alison Hunter – September 1993
Somewhere in the recesses of my mind there is a memory of being active, of having the energy to be active…when sprinting across the street was a reflex action and a good day was a day in the surf followed then by dinner at a new restaurant followed by a movie.
There was a time when my body parts just existed…now, they ache as if to remind me of their presence. “Yeah boys, how you doin’, still there, GREAT.” An average day now consists of showering (with a seat), getting dressed, and perhaps a few hours of study interspersed with hours on the horizontal.
The fatigue is not everyday tiredness, experienced after an energetic day’s gardening. It is an exhaustion of body and mind so profound that it becomes a concerted effort to think, walk and sometimes even move, sit, eat or breathe. Arms and legs turn to lead; they sink through the mattress to eternity…there is often pain throughout the body which can be constant and localised (for e.g. continual severe headache) or migratory…calf muscles one day, finger joints the next. Then there is nausea, diarrhoea, ringing in the ears…
Aside from the physical problems there are the cognitive symptoms (the memory loss, the lack of concentration) alongside the neurological: the dizziness and sensitivities to extremes of temperature, light and noise.
Doctors have at last pinpointed the mechanism by which such signs occur–lack of bloodflow to certain areas of the brain. Little comfort when at the age of 18, one finds oneself unable to remember one’s home address, misspelling or mispronouncing basic words or walking into a room with no recollection of why or how.
“How are you?” is a question I’m asked all the time; every day almost by friends, family. Most people don’t really want to know; it’s a form of etiquette, and usually a customary “Okay” or “Not too bad” fits the bill. “Not too good”, on the other hand, or (heaven forbid) “Quite unwell” is met with a look that says, “Whaddaya mean?!” I have breached the unwritten code of greeting…awkward silence ensues. Admittedly, many don’t even listen to the reply: “How are you?” “Not feeling at all well.” “That’s great, did you see the movie on Channel Nine last night?”
A big problem is that aside from pallor I generally look healthy enough…a problem, because one loses credibility when one doesn’t conform to the ‘sick stereotype’–supposedly thin, frail and slow mo–and are predisposed to comments like “How can YOU be sick, you don’t look at all sick?”
With a disease lacking a diagnostic test everyone’s an expert…everybody knows someone’s niece or cousin twice removed who went to see Dr So-and-so and now she’s climbing mountains. Each new regime might be ‘the One’ to set things moving in the right direction. They stretch from the sublime to the ridiculous but you must try them all lest “don’t you ever want to recover?” These treatments aren’t always benign, leaving you worse off than when you started, not to mention emotionally and financially.
Seven years down the track there’s nothing I haven’t tried: Chinese herbs, positive thinking, acupuncture, positive thinking, dietary manipulation, positive thinking, aromatherapy, positive thinking, electromagnetic therapy, all the while thinking positive because, “With a positive attitude you’re almost there.” Well, thinking negative certainly doesn’t help, but remarks such as “Chin up”, “Look on the bright side”, “There are many people worse off than you” only serve to alienate. Surely for a person to be cheerful all the time given the pain level, lifestyle restrictions etc would be a cause for concern.
Should these treatments fail it is invariably because you didn’t have the right attitude, because “Mrs Jones tried it and hasn’t looked back”, a mentality accurately summed up as ‘wellness macho’.
We present a challenge to doctors…if they know us well they believe we are ill but are at a loss as to how to help…most patients aren’t so lucky and are labelled neurotic, school phobic, anorexic, menopausal, hypochondriacal, and are handed a referral to see friendly Mr – to have a little chat about why we need to be sick. This is extremely damaging.
However even the most understanding doctor becomes frustrated when tests repeatedly come back ‘normal’. They cannot give us a pill to make it (and us) go away, and worsening health drives us back again and again in desperation to ask, “Doctor, can’t you do something??”
Rarely will they say, “I don’t know what is wrong with you”, which they see as incompetence, when in fact the patient already realises this, and is far preferable to yet another blame-the-patient technique.
For pain, other than strong medication, distraction therapy wards off insanity in desperate moments, be it gentle massage, an engaging comedy, company, laughter…distraction as a form of pain relief has been known from centuries such as this quite probably effective (if outmoded) example found in the Oxford Concise Medical Dictionary: “A seton is a skein of cotton or the like passed below skin and left with ends protruding to maintain an artificial issue as a counter irritant.”
Having missed altogether four years of schooling I may not have received a formal education, nevertheless I have learnt many invaluable ‘life lessons’ I don’t believe are to be found between classroom walls, for example tolerance, empathy and open-mindedness. I don’t hold much with the enriched sufferer theories however: “Great, I’ve suffered unrelenting pain for seven years, but I’m gonna be a better citizen.”
Books, newspapers, radio and some television programs…these have been my umbilical cord to outside life, a world I often don’t feel a part of. I have reached the conclusion that should be a number one priority although it is generally taken for granted, even by me; in the rare instances I catch a glimpse of it, feel the energy in my fuel tank, I am like a compulsive spender, spending the last drop plus more until I am back in bed. In my world you pay for your fun. Sometimes it is worth it–often it isn’t; we have no problem with motivation; quite the opposite, we are our own worst enemies.
My family have been wonderful, after all an illness like this impacts upon every member…Mum’s had to give up work temporarily, no more spontaneous family holidays, siblings take a back seat.
It’s hard being a teenager, trying to assert your individuality while so forcibly dependant on people for practical care. Of prime importance to adolescents is the need to feel accepted, normal, “one of the pack”. This is impossible to achieve when you mysteriously disappear every day after recess, receive extensions on assignments and have to decline invitations to most parties, sporting activities etc.
I am lucky to have a few “healthy” friends who are supportive and as understanding as they can be, who visit when I am bedbound and no longer ask if I’d like to go on interstate hikes. I also have strong friendships with adolescents with the same illness–we can provide mutual support & encouragement…most of all we can ‘Lounge Lizard’ together.
When you are chronically ill, you tend to lose your identity to the illness; it defines who you are and what you are capable of…particularly in other people’s perceptions. Sometimes I’m tempted to yell, “What about me the person?” I have thoughts and feelings aside from those associated with the illness, if not the opportunity, nor indeed the energy, to express them. All the normal adolescent turmoil is experienced, perhaps magnified and without resolution, for how do we assert our individuality if not through experiencing life and interacting with a wide variety of human beings…certainly not lying in bed, doing the rounds of specialists once again, just in case, just to make sure they didn’t miss something “fixable”.
For years I was going to be “all better next week”. Now I know better, I know the statistics and am aware that I have moved into the so-called chronic stage with little chance of spontaneous remission. A cure may be just around the corner but I have to face the fact that I may be sick for a long time yet.
It’s not AIDS, although it’s similar, you can feel equally as ill only it doesn’t kill you. Not cancer either. I’m not dying or anything drastic like that. It’s M.E. Don’t forget M.E.
Alison lost her battle in 1996. Despite the fact ME can kill, we still don’t have a designated medical speciality for ME today.
Jodi is a founder of Hummingbirds’ Foundation for Myalgic Encephalomyelitis (HFME). She was one of the fierce advocates for Severe ME.
Before ICP (2012) or even today, her well of knowledge of ME is a go-to place for patients who wants to learn about what is happening to their body.
Her death on 11 June 2016 was grieved by the community of Severe ME and their loved ones worldwide.
Extreme Severe ME
As a person who is living with Very Severe ME, who is mostly bedbound and require assistance with daily functions and too ill to attend regular medical appointments (ICP, page 9), I believe the Very Severe ME category needs to be divided into two (2) categories, Very Severe ME and Extreme Severe ME. This will allow us to provide the appropriate and relevant care and support pathway for each severity category.
Very Severe ME requires regular/continuing clinical care at home and high level disability support that would focus on everyday living.
Extreme Severe ME requires palliative care for neurological diseases. It will also give access to Voluntary Assisted Dying if/when a patient wishes.
With the Voluntary Assisted Dying for Extreme Severe ME, I strongly suggest the loved ones with Extreme Severe ME will also receive support with the decision making process and grieving. I have witnessed the long lasting and intense grief of the loved one left behind.
When Donimo decided to seek support from Medical Assistance in Dying for her Extreme Severe ME, her loved ones’ grief started.
Sarah, Donimo’s partner, has been sharing her grieving journey on Instagram. It has been utterly painful to follow her grief.
Donimo left us on 21 April 2020. Sarah, Donimo’s family and loved ones are still going through intense grief. Sarah’s question “WHY?” still hasn’t been answered.
While grieving is a personal journey, I sincerely hope they will find peace eventually.
People with Severe ME is the passion behind our charitable purpose.
Please spread the word of awareness and encouragement to people with Severe ME to keep hoping.
We sincerely hope the awareness will reach the government and policymakers to support us in establishing the ME Clinic to bring healthcare people with ME, including those who are permanently homebound and bedbound.
We advocate for ME International Consensus Primer for Medical Practitioners (ICP) for accurate diagnosis of ME and safe and appropriate management/treatment from our future ME Clinic.
An estimated 50% of Long Covid will be diagnosed with ME. More and more research is identifying the similarity between Long Covid and ME. (Here, here and here) The need for specialised healthcare for ME is even more critical now.
We are reaching out to clinicians to support our initiatives to improve clinical care for ME. If you wish to help people with ME, please contact us. We would love to chat about possibilities and opportunities.
With your support, as a collaboration between Health Consumers and Clinicians, I desperately hope the message will reach the Government, and we will receive support and funding to make this history making clinical care implemented.
Be the change you wish to see in the world.Mahatma Gandhi