[Written by Ann Rowbory, carer and mother of Jenny.]
I have a dream that there will be a UK hospital for severely affected ME patients.
These patients’ needs are many and different from other patients. For example, they cannot have visitors because many of them are unable to talk and just having someone present in the same room as them is painful for them and causes overexertion and worsening of symptoms. They also cannot take the risk of infections that visitors might bring with them. They cannot have doctors and nurses constantly coming in and out of their room or talking in their ‘stations’ on a ward. They cannot have ward cleaning noises and smells (due to acute noise and chemical sensitivity).
They need individual rooms especially built to block outside noise from coming in and special doors and windows which block outside noise from coming in because severely affected ME patients are hypersensitive to any inside and outside noise. They need curtains drawn because light from the windows often hurts their eyes all the time. Their pupils are more dilated than normal and therefore let in more light than they should. This is a sign of dysautonomia which is often present in severely affected patients. They need windows shut because of outside noise, even in very hot weather. Fans and air conditioning units cannot be used (noise is akin to physical exertion for severe patients so causes deterioration; it also causes pain). They need no telephones ringing, no electric or petrol machines or power tools anywhere in the vicinity, not even medical machinery. Carers and doctors need to whisper to the patient because that is a more comfortable level of noise for the patient.
Patients need soft food with as little chewing as possible because their jaw muscles are affected (all muscles are affected in ME) and tire easily and quickly. Some days they may not have the energy to eat. Other days the food would have to be cut up very small, and patients need plastic cutlery (lighter to hold) and they may need feeding. Because they cannot sit up (due to heart failure and/or POTS), plates and bowls need to be balanced on the chest. Napkins or bibs are needed for every meal. Drinks need to be cold still water (in small plastic bottles so they don’t have to keep buzzing for help – people in the room take up energy) with bendy plastic straws. Because they usually feel hot all the time – temperature regulation is awry and they usually don’t sweat, little, if any, heating is required in the room. Washing patients involves a huge expense of energy on the part of the patient and can cause rapid worsening of symptom severity for days/weeks and needs to be kept to the bare necessities, with non-perfumed wipes doing a quicker job than water and soap. Commode emptying and cleaning needs to be done somewhere distant, not in the same room as the patient, because of noise and smells. Loo roll needs to be within arm’s length of the patient, as does everything they need to use.
They need an iphone, but not for the phone, for sending Twitter, FB and emails. They can just about use their thumbs to tap out messages to carers and the outside world on better days. They cannot use laptops, ipads, computers and books because they are too heavy to hold and because they often cannot focus for long and/or have headaches. This is their sole communication aid, apart from hand and face signals.
Although severely affected ME patients need to be left alone, they need more than a care home can offer. They need specially trained staff who understand the severe symptoms of ME and whose working lives are prepared to reflect this understanding. So, for example, wearing clothes not washed in strong washing powder scent. Not wearing perfume or aftershave or using scented soap or shower gel. Carers need to be prepared to communicate with the patient through emails, texts and the special hand or face signs of the patient. All cleaning products need to be perfume-free – so bleach cannot be used, as do all pharmaceutical products. Patients need people to source and buy products for them which do not smell, e.g. hand wipes, sanitary towels, suppositories, washing powder, loo roll, hair shampoo, soap, etc. They need those specially trained staff available 24/7 because patients are unable to do most things for themselves.
They need, at the very least, doctors who are open to the possibility that the illness may be caused by a virus. Absence of proof is not proof of absence, as Dr Edwin J Masters said. Doctors need an open pro-active mind-set towards ME. Different treatments that have been tried elsewhere globally could be tried, whilst keeping an initial distant watch – through a darkened internal noise-proof window, to watch for any adverse reactions. A good starting point, for example, in my opinion, would be high dose IV Vitamin C. This is easy to administer, relatively cheap and it is safe when given to bowel tolerance levels, which varies individually, so no one size fits all is appropriate. Patients need doctors who believe them and who believe that the illness is not psychological – that patients didn’t become ill because of psychological disorders or exercise-deficient states. They need doctors who understand that any sort of physical exertion damages their bodies and could potentially lead to death.
They need people to take care of their correspondence – official and social, to fill in forms, etc. For example, they need people to buy cards and presents for family and friends and to write letters to keep in touch with friends and give them updates. They need banks and other official organisations to understand their condition and have policies that reflect this understanding, so for example in particular, that asking for a signature is not attainable for the severely affected ME patient. This does not mean the patient wants to relinquish control of their affairs.
Carers should not have to undertake this specialist care by default. It could easily be beyond their capabilities and leaves the patients at risk of abuse. These patients are more severely and chronically ill than patients having operations. They may be too weak to survive an operation. These patients cannot afford the luxury of the energy expended by patients in ordinary hospitals. Just existing and surviving, bed-bound and unable to sit up, barely able to turn themselves, is their main task of a day, anything else is pushing the boundaries of their mitochondria.
Severely affected ME patients need architects to design a building, a government with a will to facilitate the resources, and public and professional education on the illness and its effects on patients, their families, buildings, the environment and communities. Dickens would have had a field day with how things presently stand. Let’s bring this illness further into the twenty-first century and away from viewing it as a predominantly mental illness. No doubt a tiny percentage of general fatigue state patients do have psychological needs which need to be met, but that is not the case for the vast majority of ME patients who just want their lives, or as near as possible, back. The drug Rituximab seems to have given lives back to ME patients in the latest Norwegian trial. This could suggest B lymphocyte involvement in the condition.
For NICE Guidelines on ME to categorically state that no anti-viral medication should be offered to ME patients means that they have categorically ruled out a viral component of this illness, despite many ME patients’ histories of initial onset with infection. But as the cause of ME has not been identified, it is not logical nor scientific to state definitively what should or should not be used with patients. Of course, NICE also includes that individual doctors do retain the right to do as they see clinically fit in individual cases, but in practice, if doctors were to exert this right, their fitness to practise would and has been investigated and their licence under possible threat. So in effect, the NICE Guidelines have the same result as an unwritten law within medical circles, prohibiting any action other than Cognitive Behavioural Therapy or Graded Exercise Therapy (very dangerous). Hence the fear of most doctors treating severely affected ME patients. UK patients, if they do not wish to have CBT or GET, are left with no other officially allowed treatments currently. Perhaps if there were consent forms available, similar to those patients sign for operations, for ME patients to sign (via their iphones) before doctors treat their ME patients, then this might be a way forward in promoting more pro-active treatment and innovation in this condition. We should not be in the current situation where the actions which are in the best interests of the patient are not in the best interests of the doctor.
Will you dream this dream with me? Who will care whether this patient cohort gets the NHS recognition and treatment and a building they deserve?