Paralysis, a qualitative study of people with Severe Myalgic Encephalomyelitis
GREG AND LINDA CROWHURST (AUGUST 8TH 2013).
Paralysis is a symptom that is rarely highlighted in the literature for ME, yet is found amongst the most severely ill ME population and even some of those not so severely affected.
My wife has experienced it for almost 2 decades, without adequate exploration, alongside exposure to denial and dismissal, ignorance and neglect as well as harmful treatment.
We wanted to find out if there was anyone else with a similar experience to my wife's or if she was a rare and very severe case. We wanted to highlight the seriousness of this symptom and ask why it is being ignored and down played not only by the medical profession, with its inappropriate focus on fatigue and the psychosocial response, but also by the main charities, none of whom, flag it up as a main symptom.
This qualitative research study indicates that there are significant others experiencing apparently similar paralysis and that my wife is not unique. It begs the question why are they being neglected and why is there not urgent research into the understanding and alleviation of this devastating physical symptom? What is the mechanism, are there different mechanisms at play and are there any possible ways to treat it?
This understanding and frustration led us to ask others for their experiences. In all we received
46 responses, which all confirmed varying degrees of transient awake or sleep paralysis.
Unfortunately only 23 were able to confirm their agreement for publication...
Clearly there is some similarity between most people's experience in this research sample, something is occurring which is causing people either to be totally and/or partially unable to move or function. This is such a serious physical symptom. It deserves more attention and medical investigation. It requires specialist input from medically knowledgeable consultants.
What is also needed, however, is serious physical research in this area and a change of direction and attitude, not least from the charities, who unbelievably, do not even identify paralysis as a symptom on their main symptom lists. They need to start speaking up about the true physical dysfunction and symptoms of genuine ME.
Paralysis is not just tiredness. Paralysis in ME is frightening and regularly incapacitating for people and very real. It is long over due for respect and biomedical investigation.
It leaves us still asking how can such a serious, severely disabling symptom be so dismissed, neglected or misinterpreted? How can people be left to cope for decades in this state, often without adequate health or care support? We do not understand and can find no justification for it.
Unfortunately the new UK ME Research Collaborative, supported by mainstream charities, seems to be a step in the wrong direction for people with ME, giving more apparent acceptance and power to the psychiatric paradigm and not clearly separating ME research from psychiatric fatigue research.
This is a huge mistake, which will potentially leave the most severely affected people with Myalgic encephalomyelitis still without the much needed validation of a clear, separate definition from fatigue, that is essential in order to honour and thereby accurately and fairly investigate their serious physical illness, particularly the more serious symptom of paralysis.
What is required is a politically effective voice, across the board to represent the most severely affected, to ensure that people with Very Severe ME have a genuine voice and fair treatment. It is hoped that the newly created Severe Myalgic Encephalomyelitis Understanding and Remembrance Day on August 8th, each year, will be a focus for this much needed voice and have a powerful impact.