Let us say "no more CFS."
I have always had Severe ME, have never known a moment since I became ill and collapsed that has been without severe constant pain, paralysis, light and noise sensitivity, pins and needles, numbness, muscle dysfunction , damaged motor control, gut issues and a host of complex sensitivities and other symptoms.
I quickly developed shaking spasms and my cognitive function deteriorated massively over almost 2 decades now, so that I can no longer do what I call in/ out transactions.
Anything requiring information to come in , whether reading or listening, be understood, then reflected upon or thought about, then acted on in some physical way in some out going action such as writing, speaking , sorting out, dealing with externally, is quite simply and shockingly beyond my capability.
I cannot tolerate or comprehend noise or information, I cannot bear visual stimulation requiring focus or cognition.
What is probably most shocking though is that even though this symptom onslaught has been massive and continuous, rendering me house and bed bound for 19 years, yet still I find myself being misrepresented and misunderstood, still I struggle to convey how incredibly ill I am or rather perhaps, I convey it but most ordinary people sadly do not relate to it, cannot comprehend it, negate it at every turn, minimise it, fail to empathise with me or acknowledge just how horrendous and bizarre my experience actually is.
My husband and I have fought hard these last 2 decades for proper recognition, investigations, tests and treatments, for Severe ME. In fact so ill am I that I can no longer say I just have Severe ME, I have been sliding slowly down such a long and slippery slope into what can only honestly be described as physical hell. I now have Very Severe ME indeed and here the world becomes an even more scary place than before.
When you get as ill as I am and as ill as many of you may also be too, you will know what I mean when I say you feel you are dying. It lives with you. You live on the edge of existence.
Some days you do not know if you have enough energy to breathe, sometimes you wake up in a shock, with heart pounding, thinking you are dying imminently, if you have paralysis as extreme and as regularly as I do, you never know if you are actually experiencing a stroke, it is so disturbing and physically distressing, you become removed and removed and further removed from everything that was normal and even from what becomes normal, as your body functions less and less and you are stormed by an assault of continuos symptoms with new ones developing and severity increasing down the years, beyond even what you thought was possible.
You wonder how your body can possibly stay alive in this much torment and tortuous state, you feel inflamed and that inflammation increases, throbs, burns , damages you inside your head, your neck, your body, pierces your mind until you do not know how you can bear the intolerable indescribable extreme pain you are in and as even that increases you wonder if you will actually die in the next moment or the one after that.
I know that you will know this if you have severe ME. You simply do not know exactly how very ill your body is and whether you are actually dying or not , the symptom experience is so extreme. But is that not incredibly shocking ? I feel like I am dying, but no one can tell me if it is correct. I know when other people with Severe ME have had similar extreme symptoms to me they have actually died. I have massive problems with food intolerance's that flare and can be extreme. I lost 3 stone last year because I could not tolerate food.
My friend Sue Firth died because she could not tolerate food. How dreadfully shocking is that? Yet no one appears to be shocked enough.
When I got to that extreme place of malnutrition and difficulties digesting food, I could not help wonder if I might be the next person to die. I am still here, but my noise sensitivity has become so acute that I cannot bear to hear ordinary voices. I am damaged by any noise external to me. It hurts me in an extreme, indescribable way. I can find no sanctuary from noise in my own home. I cannot protect myself against it as I cannot tolerate any physical contact or pressure on my head.
Road traffic passes by my window. jets scream regularly over head ,flying round and round in circles , all day long sometimes, past my house, lawn mowers dement me, their vibration assaults my whole body physically and sends me into jellification and instant paralysis.
I cannot bear the sound of cutlery on plates or dishes, the sound of the kettle, the bang of a door, a phone conversation in the next room, footsteps on the stairs, my neighbours in their garden. every ordinary thing that people take for granted not only irritates, hurts, upsets me, it harms, damages, deteriorates me. I am in a living nightmare.
I know that when Sophia Mirza died her mother could not be with her because her noise sensitivity was so acute. And so I am not exaggerating or being melodramatic when I wonder too, with this level of hyperacusis , am I dying too? Will this kill me? Can my body take much more?
You will not be surprised when I say that I know people who have thought of suicide. You will not be surprised when I say that other people have written to me over the years asking if they are dying? Do we know?
What is so terribly shocking is the complete medical neglect that people with Severe ME experience in the UK, such that people can be as ill as I am for decades and still NOT know what is actually going wrong in their bodies, NOT actually have access to proper biomedical testing, NOT have the personal funds to do even rudimentary tests to uncover possible mitochondrial dysfunction or environmental poisoning or vitamin D deficiency, to name only a couple of tests, NOT have the security and safety of knowing that they are being respected and treated for their physical disease, NOT even knowing who it is safe to turn to medically to get answers and NOT being able to afford to pay to see the rare as hens teeth biomedical consultants that might be available privately, NOT even having the security that ME is being treated as a neurological disease and certainly NOT being safe to go and see a neurologist because you will not be taken seriously.
This is the shocking state of affairs for people with the genuine neurological disease, ME.
We have, as I said, fought to be heard, spoken out, my husband and I, been unpopular for speaking the truth - when you are as ill as I am you have to fight your corner against all the nonsense and misrepresentation that charades as ME representation.
We have spoken up repeatedly for only the proper use of the proper name, Myalgic Encephalomyelitis . Most importantly we continue to demand proper diagnostic criteria that identify the neurological symptoms of the genuine ME sufferer, we continue to fight against the sea of ' fatigue' terminology and the wrong use of the term fatigue as a symptom of ME, we continue to speak up against the use of the term CFS or CFS/ME or ME/CFS that continually is used to misinterpret ME and include it in a fatigue version of reality that simply does not belong with myalgic encephalomyelitis.
We continue to speak out against the wrong use of CBT and GET , even the wrong use of pacing and activity management for people with severe ME. Most of all we continue to demand a proper biomedical health service and a separation of people with ME as a distinct illness separate from the fatigue conditions often confused by the media and used to misrepresent our reality and justify the fatigue clinics.
But sadly what we find is not enough other people are speaking up. They are complacent. They do not seem to mind that their illness is being downgraded and disappeared by psychiatry and the rising tide of fatigue interpretation. Or they rely on others to do it for them. But do you know who to trust? Who is actually speaking up for the truth? Do you know if those you rely on are actually representing you or compromising on truth for some other gain?
What is worrying is the real dearth of biomedical consultants who have a clue about ME at all. People associated with Ramsay are too few and dwindling. Betty Dowsett sadly died recently, to name a giant who stood up for Truth. But who remains in their place and are they comparable. What frightens me is there are so few, if any to turn to, who will even use the right name or use the best diagnostic criteria, the ICC , to ensure they are accurately diagnosing ME. What we have now is a focus on fatigue and CFS. But CFS is not ME no matter how loudly those who have accepted that diagnosis shout that it is.
It is an unsafe label. An unclear diagnosis that could have been made using a variety of different diagnostic criteria, from the psychiatric Oxford criteria to the vague Fukuda fatigue criteria which do not even identify neurological symptoms.
What is most upsetting is that it is the medical profession that is colluding with psychiatry and the government, accepting the NICE guidelines which can endanger the lives of ME sufferers if they follow the CBT/GET recommendations and proscribe the very medical tests that people need , it is the medical professionals themselves that are not speaking up to ensure safe diagnosis, the adoption of the ICC criteria,or its predecessor the Canadian criteria. There is little formal recognition that the Post exertional malaise and muscle fatigue that occur with ME are not the same as fatigue.
The most worrying thing is that there is not the medical knowledge and expertise within the NHS to really safely help us or keep us safe or look to find out what is really making us ill.
Symptom management is not good enough, unclear definitions are not good enough, no biomedical aware ME consultants is not good enough, using the CFS term is not good enough, fatigue clinics and fatigue consultants and fatigue research is not good enough and not knowing how close we might be to deterioration and death is certainly NOT good enough in terms of provision for people with a WHO neurological disease.
If you do one thing today, let it be to make the resolve to speak up that there are currently no appropriate biomedical clinics for Myalgic encephalomyelitis and decide that today you will determine to get a better service for your self for your serious and severe disease.
I do not want to die from this disease . I do not want anyone else to die from this disease or to kill themselves from despair and neglect.
Let us say enough is enough. Let us say no more CFS.
Let us call for accurate ME diagnosis.
Let us call for accurate ME diagnosis.
Let us call for ME consultants and ME clinics and ME tests and investigations and biomedical treatment.
Let us call for no more fatigue.
It is a misrepresentation and misinterpretation of our illness.
I want a proper medical service for ME . I want to be safe. Don't you?