A Tribute To Kara Jane Spencer for Severe ME Understanding and Remembrance Day, August 8th 2023, by Linda Crowhurst

My husband asked me recently what I thought the word “Lament” means. Lament to me is more than sadness, more than loss, more than pain, more than emptiness, it has a power and and a sense of truth and rightness, of love in a fire of expression. All mingle together in a powerful way to enable an outpouring of feeling that encompasses the greatness of  these. It may feel unquenchable, yet it is a necessary part of honouring those we have loved and lost to death, whose lives no longer bless our world, yet whose spirits live on in so many echoes from the past.

Dwelling on the death of several friends who have died recently and in particular one who we loved especially dear, “lament” seems a fitting word to describe the words that I wrote for our friend Kara’s passing:

Your pain, is my pain, is our pain

Your suffering, is my suffering, is our suffering

Your grief, is my grief, is our grief

Your loss is forever my loss, is forever our loss.

Our tears will flow

Till the oceans are full and still they will weep.

This is the amount of honour due to you

To recognise all that you were,

all that you have been,

all that you will ever be to us.

Our tears cannot be assuaged

Your loveliness still echoes here.

Your love remains

And burns in our hearts,

Forever more than a memory.

My dear friend Kara Jane Spencer died on January second 2023, after a life of truly unimaginable suffering that most could not begin to comprehend.

 I guess that is one of the strangest gifts of living in a tortured state of agony for decades, I can at least gain some small insight into that pain, though her suffering went far beyond that in the last years of her life. In fact it was that shared suffering that brought us together, that shared experience of extreme agony and profound disability that no one else could relate to adequately.

Listening to her song, ‘Remember Us’, which she recorded under the most difficult of circumstances, bed bound, unable to sit up, needing oxygen to help her breathe, in uncontrollable pain, it was a stunning, deeply moving achievement.

Looking at my own writings on the denial, medical neglect and deaths of people with Severe ME, I feel impelled to lament her passing and to speak up about the abject nonsense that passes for information about ME and the treatment of ME.

Myalgic Encephalomyelitis, a neurological disease with multi-system dysfunction, first recognised as caused by a Coxsackie B virus in the 1950’s, has been buried over decades in a sea of misdirection and misinterpretation, covered in layers of fatigue- speak, that leaves anyone diagnosed with this illness vulnerable to mistreatment and misinterpretation, particularly those most severely affected with the more severe end of the wide spectrum of symptoms.

Unfortunately, due to a vocal, powerful psychiatric influence which in effect hijacked any real hope of getting its origin accurately conferred and medically recognised, ME has not been taken medically seriously enough in the UK for decades. This has left many seriously ill people without physiological explanation for each and every symptom experienced. They have been left without the development of a specific provable test that can identify their disease from a sea of other illnesses and ignored conditions.

Without appropriate medical treatment or in-depth investigation of and respect for their symptoms, those most severely to profoundly impacted, have been abandoned to live in isolation from normal life, friends, family and society, fighting for care that is often poorly provided, limited or not there, placing heavy demands on loved ones willing and able to provide for their family member. They are often in dire need of help and understanding that is simply not found.

The lack of a homogenous identity in the patients given the generalised name “ME/CFS”, means that there are no specific disease parameters to encircle the illness that people have, in order to accurately recognise it, which surely must ensure that any real progress in medically helping these people regain their health or any quality of life at all, is hampered.

You simply cannot safely treat everyone as if they have the same disease, even if you give them the same generalised label, for they are different.

It seems to me that the more severely your body is impacted, the more likely it is that you will be overlooked, told you cannot be helped or given wrong and potentially harmful treatment recommendations. And once deteriorated, still left without proper interventions.

Even if people have the same symptoms, this in no way means that those symptoms are necessarily caused by the same physiological malfunction. This is the most scary thing of all to me. The same symptoms may have multiple alternative pathways, so looking at symptoms alone cannot help people get their health or their lives back.

The underlying medical issues must be identified or there will be no hope for individuals and no safe treatments that can be applied, even if this is what is being touted. If you do not know the underlying cause of your symptoms, how can you know what is safe to take? What is safe to try? What are the odds of help vs deterioration?

So management will continue to be the only thing that is likely to be focussed upon, leaving people in desperate need for decades, often living minimal lives in agony, with no hope of change, hanging on for the medical establishment to wake up and admit it’s shameful treatment of people with ME and move in a new direction.

Not identifying the underlying physiology and cause of the illness helps no one who is ill.

If they are not even trying to focus on the specificity of the disease then the medical establishment cannot possibly find a common treatment pathway.

You cannot find right answers if you do not research a homogenous patient group with similar physiology.

This should have been the approach all along. It should have been there by now, but has been deliberately fudged to create a heterogeneous group of people who have different conditions and very different underlying causes to their ill health, who have been lumped together to create a group of generalised fatigue patients, who may or may not even have the same disease or specifically the named disease Myalgic Encephalomyelitis, or even have fatigue at all. How, honestly, does this help anyone?

Far too many people we have known  personally have died without medical answers, appropriate treatment, understanding or support, OFTEN IN UNTREATABLE AGONY.

One of Kara’s hopes was to fund a Biobank to collect and research the tissues of people who have died with an ME diagnosis, in order to start finding physiological answers. Her music also bears witness to the terrible suffering and losses that she and others like her have suffered in a no man’s land of ignorance and denial.

Surely there must be a medical sea change if people are to get genuine help and have realistic hope in a better life ahead. The suffering is unimaginably cruel on multiple levels, the ignorance and unkindness people often experience is truly shocking.

The physical, emotional and mental isolation enforced by extreme symptom experience is way beyond anything people faced in lock down, because it can literally go on for the whole of people’s lives; acute and chronic, severe, incurable pain, that cannot be relieved, an inability to think, speak, move, sit up, eat, give yourself food, get to a toilet, wash yourself, dress yourself, communicate, interact, live in the world. All these things are par for the course for decades with a diagnosis of Severe ME.

Who knows who might actually have a treatable condition or other illness, not ME?

The lazy diagnosis of “ME/CFS”, with its vague criteria and no test, means nothing specific, clear or helpful. The medical profession, the charities and society must speak up against the misdirection of psychiatry before people with ME can begin to get better help and understanding.

It is too late for Kara. It is too late for so many much loved and respected friends. The losses are unquantifiable, the number of deaths mount each year and everyone who knows about the true situation weeps not only for the loss of their friend or family member, but also for the injustice, the medical neglect, the harm done and the wrongness of the medical establishment’s position, the precious lives lived in intolerable circumstances and lost forever without proper recognition of their need.