I just don't get it !
Why we should not use the term CFS and why we all need to challenge its use and stop being complacent about it.
To me its a life and death matter. If you don't wake up and open your eyes to what is going on in the UK, we will never get proper medical treatment and health respect for people with Myalgic Encephalomyelitis (ME).
People will continue to take their own lives from sheer medical neglect and people will continue to deteriorate and die from wrong or no treatment.
It seems to me that there is almost total confusion surrounding the illness ME because of the use of the term CFS. Some people may have been diagnosed as CFS, others as CFS/ME, others as ME or ME/CFS.
Some will have self -diagnosed themselves, others will have seen a GP, some will have gone to a CFS clinic and some if they have been ill long enough may have seen one of the few knowledgeable , who, I would term as 'old school ' ME consultants who knew or knew of Ramsay and hopefully have been properly diagnosed.
The issue of what label you use to define your illness really matters. Too many people do not seem to realise why it is so important, why all the time they accept the term CFS as a valid term for ME they are actually aiding the psychiatric lobby , who have done such harm to the proper medical treatment of very physically ill ME sufferers.
Anyone who uses the term CFS or CFS/ME is accepting a wide definition that may or may not accurately diagnose people with ME.
Do not assume that ME and CFS are equivalent. For some people and some doctors and practitioners they may use the term CFS to mean neurological ME, but they may equally use it to mean a psychiatric fatigue condition or just see it as a tired all the time syndrome with few symptoms, rather than realise its true nature and neurological dysfunction.
In the CFS-diagnosed population you will have 3 categories of people- CF people, ME people and people with other wrongly diagnosed or inadequately tested for illnesses. No one then is served by this diagnosis.
The patient with mental health Chronic fatigue needs appropriate psychiatric support. The person with some other fatiguing illness needs proper investigation and testing, they may even be able to get well with appropriate treatment. The person with ME is certainly not benefitting from the CFS label because they will be given a fatigue regime consisting of therapy and at best symptom management , with possibly secondary diagnosis for what would be considered a co- morbid illness. They will not get their illness properly tested with ME specific tests, scans that actually show up their dysfunction, treatments that may treat their underlying illness, regular monitoring, neurological support services, a wholistic aware approach.
They will not have a clear or full picture of what is going wrong physically in their body. They will either be offered CBT, GET, pacing and maybe given pain killers, anti- depressants, sleeping pills and/ or left to get on with it by themselves.
Most genuine severely ill ME patients will probably have fallen off the radar altogether because their health needs are simply not being provided for and what is on offer will potentially if not actually harm them. Many people are left to their GP but the GP does not necessarily know what to offer the genuine ME patients, even if they can recognise them.
The initial guidance available in UK is the flawed inadequate NICE guidelines, there are few knowledgeable practitioners for people with ME to turn to. Most require a lot of money which people ill for years, relying on benefits, struggle to afford or offer their services for free out of genuine compassion and commitment to patients. The late Betty Dowsett was one of these people who ran a free clinic and worked tirelessly to properly diagnose patients.
Virtually nowadays everyone, consultants and practitioners , it seems, uses the misconceived term Fatigue, even those with some medical background may not be knowledgeable to safely offer or suggest treatments. Many are compromised because they have bought in to the fatigue market and neither have they challenged the psychiatric paradigm or the inadequate diagnostic criteria currently being used.
The problem is that not everyone who uses the term CFS or CF or CFS/ME or even the proper name ME can be certain whether they actually have ME, because good accurate diagnosis is primarily concerned with appropriate and accurate criteria and how many can honestly say that they have had adequate diagnostic criteria applied to their illness?
How many can actually be bothered to identify or recognise their own neurological symptoms?
How many people are actually predominantly just 'tired all the time' ?
How many are so cognitively compromised that the effort to get clarity is too much for them?
How many feel too ill to deal with it all?
How many have been abused already and negated, lack confidence or feel frightened?
How many rightly lack trust in a system that is currently failing them?
How many have already been harmed? For how many is the risk or effort too great?
I have no idea, but I do know that not enough people are speaking up, complaining, refusing to accept it, challenging ill defined labels and poor diagnostic criteria, wrong inadequate or dangerous therapies charading as treatments and too many are being complacent in accepting the dearth of proper tests offered them or the scans that would potentially show up their dysfunction? Why? I do not understand it.
I know illness makes it hard, is exhausting, distressing, complicated. I know that speaking out can make you afraid, but all the time we do not collectively make ourselves heard for the truth of our illness,we will collectively continue to be offered poor inadequate biopsychosocial pathways rather than proper investigative medical testing and treatments. For me, ill as I am , this is unacceptable. Why isn't everyone speaking out?
Why is it left to a few? Is it fear or something else? Is it that many don't actually have ME?
Are people really just tired and helped by the CFS clinics? Do people just have no vision ? Or do they not understand what is happening?
Are they unaware that so much more could and should be offered?
I cannot bear the untruth and misinformation surrounding my illness. But worse I cannot bear the people who say they have ME yet who support the fatigue clinics, who do not insist there is a better medical pathway for ME . Are they happy, comfortable , okay with being ill or even with no hope and no help to improve, heal, find out and know what is going on in their bodies? I just don't get it.
Why does anyone feel happy using the term fatigue for their severe neurological dysfunction? What can that mean? I wish I understood.
For me the issue is critical. I am not just ill and isolated , I am in agony and tormented by every normal event, noise, interaction. My health, my life, depends on accurate diagnosis, on proper medical investigation and testing. I need to know what is going wrong in my body. I need to understand it. I need to feel safe. I need to know if I need treatment I will not be misunderstood or endangered. I need the underlying physiological dysfunction to be addressed not ignored .
I need to know that when I say I have ME it is correct. I would also like to know when other people say they have ME, that they actually have it too, because currently there are such poor criteria used generally that people are being wrongly and poorly diagnosed. Yet it seems that anyone and everyone can have an opinion about ME services , but are they genuinely representing the illness that I actually have?
All the time that the focus is on a vague fatigue symptom whilst post- exertional malaise and neurological symptoms are ignored and all the time that any other serious symptom is considered only as a co- morbid illness rather than looking at ME as a whole disease with multi- system dysfunction, there will, in my opinion continue to be confusion, neglect, misinformation, misrepresentation and constant infighting between people with opposing needs , all thinking they have ME, when they may not all have it.
We need to universally ask for the ICC Criteria and Primer to be respected, used and proper clinical pathways set up to investigate and aim to treat the illness. It is simply not there yet and I fear it will never be all the time people accept the use of the label CFS, with its open interpretation and all its dangerous implications, including the use of therapeutic technique to charade as a treatment, all the time denying the need or possibility of real medical investigation and physical treatment and all the time that people do not challenge the misuse of poor wide diagnostic criteria.
Wake up now or another generation will be lost to psychosocial mistreatment and the term ME may disappear for ever eventually and all the people with ME continue to be neglected and disappeared too. See how many people are compromising your life away and say 'No more!'
It is not just about the label. It is about proper diagnosis and proper symptom identification, underpinned by appropriate investigative medical tests. It is ultimately about your life your health and whether you will get adequate medical support and recognition for how very seriously ill you are with ME and whether you will actually know what is wrong with you and whether any treatment or medical support is possible.
Surely that is worth speaking up for? Don't rely on others. They may not represent you. Do it yourself and do it now, however difficult , however long it takes, resolve to get proper biomedical help, resolve to challenge the fatigue lobby with the truth.