Has Action for ME crossed a line too far ?
Why would anyone, with Severe ME( ICD 10 93.3 ), trust an organisation to run a Symposium on Severe ME, that has actively supported the inappropriate PACE and FINE Trials, has organised candle-lit vigils for the psychosocial CFS Clinics, has endorsed the NICE Guidelines, despite huge patient and other organisation condemnation, has done nothing, that we are aware of, to promote the clear separation of ME from CFS or mental health CF, nor to protect ME's specific neurological/ enteroviral identity and is currently engaged in active collaboration with the psychiatric lobby regarding research ?
Action for ME, in our opinion, has greatly contributed to the confusion surrounding ME and the cover up of ME, within a well-orchestrated sea of psychosocial fatigue. What then are the chances that it will focus, in its upcoming event, upon the pathophysiological basis of Severe ME: the most pressing issue for those with serious, physical, system dysfunction?
The keynote speaker is Professor Hugh Perry: his work on inflammation and the brain is well respected. It is a good and welcome start, but is he looking at people with ME or “CFS/ME” ?
Given the wider toxic context, the world of CBT and GET, Pacing and Activity Management, that dominates all levels of official policy, how likely is it that biomedical observations on “Sickness Behaviour” might be wrongly used to further justify psychiatric input - especially when the afternoon agenda seems to be all about positive thinking, emotional affirmation, behaviour change, plus recovery without any apparent biomedical input?
The two afternoon speakers, George Leweth and Clare McDermott, will be giving a research presentation together. It is unclear what they will be specifically be saying, however, based upon previous published material, they seem to have an uncritical acceptance of the role of CFS clinics in Severe ME and the NICE guidance on activity management for people with Severe ME. Given how far removed the NICE Guideline on “CFS/ME” is from the serious, physically ill reality of people with Severe and Very Severe ME, this is of huge concern to us,
A further concern, is their published article on service provision for Severe ME, citing references to "recovery" from "Severe ME", through Pragmatic Rehabilitation, presumably including elements of CBT, GET, PACING and Activity Management. This mainstream psychosocial approach is based, without foundation, upon a premise that the illness is caused by maladaptive thinking and deconditioning, so that rehabilitation can happen through therapy alone. One of the studies quoted was conducted on a psychiatric ward, which must raise grave concern about what conditions the participants actually had.
In over 20 years, we have never heard of anyone recovering from Severe ME, but there are 7 people we have personally known who have died with Severe ME, more have died, whom we did not know. Recovery to us seems most unlikely without treating the underlying physiological issues and serious multi-system dysfunction - as neglected today as when the CMO Report was published in 2002.
George Leweth and Clare McDermott are apparently also involved in an ongoing “Feasibility study for a community based intervention for individuals with severe CFS/ME”, which draws upon Neuro Linguistic Programming's (NLP) concept of 'modelling success' - modelling someone else's behaviour. If only it was that simple to change your behaviour to treat severe malfunction in the brain and body, without biomedical input.
When considering research, people need to remember that there is currently no cure available for ME. It is also important to recognise, here, that Chronic Fatigue Syndrome CFS/ME is not equivalent to ME. Without clearly identifying the patient cohort, it will be impossible to tell if anyone actually has ME or other unidentified physical illnesses or mental health chronic fatigue. For the research to have any real validity and value, objective measurement, rather than subjective feeling of improvement and recovery is necessary.
Like the PACE trial, which had to admit, in the end, it was not researching ME, we fear this could be another confusing study.
McDermott drawing upon her personal experience, has published on the role of “emotional processing” : how we adapt to life events. In recovery herself from “CFS/ME”, she does stress that “We still know very little about the physiological processes operating within the illness”. This should ring alarm bells when talking about Severe ME, where the underlying multi- system dysfunction leads to an incredibly complex illness experience that must be taken into account in any experimental treatment protocol.
Without understanding the underlying physiological processes , great risks are being taken potentially, with unimaginably physically frail people.
Awareness and caution are key to engaging with anyone with Severe ME.
Severe ME is devastating, especially at the most severe end of the “severe” spectrum the impact is virtually beyond comprehension. There is a pressing need for support on all levels, including emotional, but as I outline in my book : “Severe ME, featuring Justice for Karina Hansen” support is not just about what you do - it is how you do it. As I stress, in our experience, professionals generally do not have a clue how to approach someone with severe hypersensitivity and profound post- exertional exacerbation of symptoms.
The critical factor is approach.
You have to take into account the severe physical illness experience of the person and you must be aware of the negative, potential impact of the slightest intervention where even a sound , a word, or a ray of light wrongly timed, can be catastrophic. The concept of a person-centered approach to Severe ME , (which we call the “Moment” approach) as outlined in my nursing article (Crowhurst 2005) , referenced in the NICE guideline, is essential.
The support of people with Severe ME is dangerous water to tread, without adequate knowledge. Each person will be different, the most profoundly hypersensitive, being at greatest risk of long term or permanent harm, by wrong, even if well-meaning, interventions.
It will also be of interest to know who is actually participating in research and how have they been diagnosed: by their GP, self, psychiatrist, psychosocial consultant or biomedical consultant, occupational therapist or other therapist?
It is important to recognise that people may feel and even say that they have Severe ME, because their lives are severely affected. ME is a serious physical illness, however Severe ME is identified through symptom severity and intensity and level of disability, not subjective personal assessment.
Someone whose life is severely affected by ME, does not necessarily have Severe ME, which requires expert diagnosis by a biomedical clinician and proper in depth medical investigation.
Severe ME covers a wide range of experience and symptoms, all of which are mostly medically ignored – what, though, does “CFS/ME”, an umbrella diagnosis straddling more than one condition, actually focus upon? Fatigue?
With so much misinformation about, the bulk deliberately propagated by the psychiatric lobby, there is great confusion over diagnosis; how can anyone reliably say, these days, whether they actually have ME or what illness they actually have, if diagnosed with CFS ? This lack of clarity and definition is a major issue especially in terms of formulating research.
You have to ask what is meant by Severe ME in the context of this Symposium?
It is all very well talking about “emotional processing ”being required but how can it be safely enabled or practically managed - given that cognitive exertion can be as harmful as CBT and GET in Severe ME, without being deteriorative? Cognitive Dysfunction is one of the worse, in our experience, symptoms of Severe ME, yet it is so often downplayed or written off to “brain-fog”, which trivialises it.
We hope, for the sake of those involved in the research that these issues are addressed.
You cannot impose anything on anyone with Severe ME – it is never going to work. How do you safely offer emotional support to someone whose health is endangered by someone else's presence in the room? It is that complex and serious. We hope this will be addressed, not overlooked or underplayed.
People are housebound and isolated precisely because it is so hard to engage with them. To go in without adequate biomedical knowledge and recommend psychosocial, therapeutic, emotional recovery or NLP techniques is frightening to us.
It is not enough to be a well-intentioned helper, it is not enough to be a well-meaning or kind person; with Severe ME you have to get it right, there is no room for error! Good intentions, on their own, are nowhere near enough.
Engaging with someone with Severe ME is entirely unpredictable, no base lines can be set.
For the person with Very Severe ME, contact is simply beyond them, there are so many breaks to communication on every level – just about everything is a potential danger to their health. Even the smallest amount of thinking takes more energy and effort than the person has:
There are breaks to communication.
There are breaks to physical function.
There are breaks to every single ordinary things that make the world difficult to impossible to be in and access.
There is widespread cognitive dysfunction that impacts comprehending conversation, remembering information, focusing, concentrating, understanding, connecting with another person, answering questions, providing information, processing information, expressing yourself.
There is pain, muscle, nerve and head pain which is indescribable, multi- layered, may be constant and untreatable, severe to extreme and unimaginable to someone without ME.
There are fine and gross motor control issues, which may make it impossible to hold anything, to co- ordinate, to function, to perform any daily living task or activity, to walk, even to move your fingers or focus your eyes.
There is extreme physical exhaustion, which impacts every single aspect of living, even breathing, moving, thinking.
There is a post- exertional impact that simply has to be factored in to any encounter as it can result in massive deterioration and potential harm.
There is malaise, which means the person may feel constantly ill and this level of malaise is incapacitating in itself, triggered by any normal thing.
There is noise sensitivity, which can be so extreme that the person is tormented and literally damaged, resulting in increased exacerbation of other symptoms,such as pain and paralysis, breathing, by any noise at all, no matter how insignificant or irrelevant it might appear from the outside.
There is muscle dysfunction and spasms which can impact all physical action making it difficult to impossible, including swallowing, moving, sitting, walking, holding, touching.
There is light sensitivity, which can be so painful that people live in darkened rooms with sunglasses and eye masks on and this can seriously impact communication, use of computers, telephones, reading, face to face communication, everything requiring vision.
There are complex gastric issues which affect eating, digesting, swallowing, vomiting and diarrhoea.
There is a massively increased hypersensitivity to the environment which impacts every aspect of health and life. Chemical sensitivity may mean the person needs to live in a chemical free perfume free zone. Exposure to chemicals can be distressing,and damaging,cause sensitive and allergic reactions, deteriorate symptoms, yet the person living in the normal world may not even be aware that their laundry detergent, perfume, deodorant or moisturiser can make a person with Severe ME very sick.
There may be transient paralysis, facial palsy, an inability to be upright, to move, to function.
There may be shaking spasms which are uncontrollable and worsened by physical contact, over stimulation or over exertion.
Each of these factors is individually severely disabling. Add them together and you have an incredibly complex situation in which the person is easily harmed by contact from any outsider.
Put a proposed feasibility study, drawing on NLP, in context with the above and you have to ask how can it be feasible without serious risk of harm?
How do they dare take such risks? Or is this not really about ICD10 93.3 Severe ME at all, but Chronic Fatigue?
Will the upcoming Symposium deal with these issues, or will it be more of the same old, "think-yourself/well" routine?
AfME's focus has always been upon the mild and moderate – realistically, we might ask, how well have they done there?They do not have the necessary experience of Severe ME, nor the commitment to establishing an accurate definition, we believe, to cross this line.
We suggest they leave the Severely Affected to those who have a clear biomedical focus and a track record of understanding the issues of Severe ME.
Until Action for ME make a real commitment to Myalgic Encephalomyelitis, through backing valid and realistic criteria, by not pandering to psychiatry, there is no way of knowing who they are actually representing.
If they are to receive any respect from us, they need to start from the bottom and work upwards – first get the criteria right.
If they really wanted to help, this is what we suggest they should be doing :
- Calling for proper ME aids to be designed and provided for the most severely affected, who are harmed on every level by the ordinary environment.
- Campaigning for a biomedical, not a psychosocial pathway.
- Demanding psychiatry be removed from first line involvement in ME, a neurological disease.
- Backing high-end ME not CFS biomedical research.
- Ensuring the ICC Criteria are applied across the board.
- Raising awareness in the media of the real experience of Severe ME , not this constant promotion of “recovery” and “think yourself well”; the positive image denies the true reality.
- Raising awareness of the psychiatric abuse of children and young adults with ME.
- Be a voice to protect, not a voice to collude.
What a massive difference it would make if AfME were to genuinely speak-up for people with Myalgic Encephalomyeltis.
Linda Crowhurst, who has Very Severe ME, says :"Action for ME do not represent me : 'not in my name'. Who else will stand up and say so too? "
Greg & Linda Crowhurst