My name is Jill McLaughlin. I have been involved in advocacy for 15 years and have worked with many patient
groups and organizations.
I would like to address the ongoing issue of diagnosis and terminology. This is a CFS committee, yet has included ME and ME/CFS.
However, ME patients do NOT want their illness to be called CFS or changed to ME/CFS.
These CFS / CFIDS / “ME/CFS” groups continue to promote the association, ostensibly to make CFS sound more serious.
These groups have no right or mandate to represent or speak for ME patients, even though they may claim to, and collectively have too few members to presume such a thing.
ME is a stand alone dx. We do not need two names. ME is a neurological illness based on CNS dysfunction. Fatigue has no more to do with ME than it does with AIDS, MS or cancer.
ME is a testable dx of inclusion, with signs and objectively measurable pathology. CFS is an unexplained, un-testable, heterogeneous dx of exclusion. Not the same.
Contrary to widespread misinformation, the Canadian ME/CFS definition is not an ME definition. It was published a decade ago in a journal that no longer exists. The authors of the Canadian ME/CFS definition have abandoned it in favor of the ME-ICC.
The ME-ICC were written by an independent group of doctors and scientists, who, collectively, have 400 combined years of clinical and research experience, and have diagnosed or treated approximately 50 thousand patients.
The ME-ICC specifically rejects labeling ME as CFS or ME/CFS, and clearly spells out that the objective is to split ME from CFS.
They aren’t talking about subgroups, but DISTINCT separation.
This was based on scientific consensus using the delphi process, not personal preferences or political consensus based on beliefs or opinions of a narrow group, which currently seems to be the case.
The CDC multisite study will not clarify or solve problems of identifying or defining ME and CFS. This study fails to use structured clinical interviews in order to exclude psych disorders.
Sites chosen are mainly run by CFS doctors and even Fatigue clinics. With no case definitions, there are those who ascribe to the mixed ME/CFS paradigm, reducing it to merely semantics. It should not be up to a narrow, select group to subjectively decide.
Without specific case definitions to ensure that the same, uniform cohorts are used, data are flawed and results are meaningless.
There is often myopic discussion about which definition is best, but no one definition fits different illnesses.
Even using a certain term cannot ensure that we know what illness or patients are being identified, due to the conflation and combining of terms and diagnoses: ME is called CFS; CFS is called ME. And ME/CFS is up for grabs (no WHO recognition, ICD code or established case definition).
Consequently, we may have so called ME studies that contain no actual ME patients. Would MS patients allow studies to publish on MS that contained no MS patients?
From the translational aspect, it is clear that CFS research does not apply to or help ME patients, and vice versa.
It is unacceptable and the opposite of WHO convention to allow the broad, heterogeneous CFS as the main ICD tabular entry, with historically defined ME demoted to a mere synonym, despite the fact that ME is the correct medical terminology for the disease as recognized by the WHO since 1969, while CFS, the political lay term, was added to the alphabetical index ONLY in 1992.
Redefining ME/CFS is a syllogism, as there is really no such recognized diagnostic entity. Evidence based methodology will not work, as the evidence base is polluted with all these mixed, mislabeled studies with dubious or conflicting results.
There is no need to make up another mixed and potentially watered down ME/CFS definition, and then talk about subgroups for the next 20 years.
The last time that HHS was involved in defining an illness, we all know how well that turned out.
ME patients have been neglected under the broad CFS umbrella for far too long.
ME patients need an accurate diagnosis and appropriate research done on true ME patients, not incorporated with or compared to CFS.
A question from Linda on cognitive dysfunction :
The word ' cognitive dysfunction ' covers a wide range of distressing and disturbing communication difficulties which seem yet again to be down played , under-described in symptom lists and not taken seriously enough by the medical profession.
"Brain fog" is the classic name we use to cover over the horrible reality of living with a brain that is not working properly. In my experience the cognitive dysfunction is profound , intimately connected with and difficult to separate from the interaction with profound noise sensitivity, eye pain, blurred vision , photophobia, loss of motor control and ability to control physical function .
For me cognitive dysfunction causes massive problems with receiving, processing and comprehending information, whether visual, auditory, tactile, from an external source, as well as thinking ,imagining, visualising, remembering and comprehending information and speaking it.
Answering questions directly becomes virtually impossible. I can lose all connection between my thoughts and my ability to speak them.
I may hear but not be able to understand.
I may want to communicate in writing , yet I am completely unable to hold a pen, type a single letter, connect with my thoughts to explain them verbally.
Anything requiring information coming into my brain - then some thought process, followed by action is unlikely to happen 99% of the time.
I simply have breaks to connection and action and communication in every way. This is not conveyed in my opinion nor taken seriously by the medical profession and certainly not in the poor criteria used to supposedly identify ME, which fails us all so profoundly.
We live in effect with a form of dementia, yet it is not treated as such.
We live with damaged brains yet how many doctors do you see representing it like that and trying to treat it with the medical respect and acknowledgement it deserves?
I am able to convey some outward thoughts if they happen to be accessible in my brain at a particular connected moment. They come rarely.
I am frustrated by the lack of integrity surrounding the representation of ME and hope to put together with Greg's help ,at some point, a document to raise awareness of just how very severely affected the person with Severe ME actually is.
Greg also intends highlighting these issues in the coming update of his book," Care for Someone with Severe Myalgic Encephalomyelitis."
If you are able to and are willing to share your own experience, conveying if possible how complex and disabling brain fog actually is - and you do not mind being quoted anonymously, please tell us; it may not be possible to use all material.
We live with horrendously disturbing and distressing symptoms. We deserve much better recognition of what we go through.
Where are the rest of us going wrong ?
I wonder how many people with severe ME experience paralysis. I have only actually heard of a couple of people and I have never know anyone personally who experiences it in the same way as me. I think that when people say they are paralysed we all think it means the same thing. We don't ask for more information. So we don't get a clear picture.
In severe ME no one seems to take much notice of it, even the doctors and it tends to be rarely put on any list of symptoms, even though it is so serious and extreme. In fact most neurological symptoms tend to be down played in ME, thus we have the totally misrepresenting image of the 'tired all the time' person whose fundamental symptom is fatigue. No. That is not me and if it is you then I doubt you actually have ME to be honest. That or I don't!
In fact the people I have known with the worst symptoms, often think they may not have ME because their symptoms are so extreme that they simply do not fit in to the popular image, even the ones presented by the main charities. They simply forget to include the most extreme neurological symptoms, the paralysis, the shaking spasms and tremor, the swallowing difficulties, the numbness, the loss of proprioception, the dysautonomia, despite the fact that ME is a neurological disease. You'd be hard pressed to name the neurological symptoms unless you had read the ICC criteria. You certainly wont find them in the Oxford or Fukuda criteria or the CDC criteria. So how come they are dominating our lives and our neurological disease? Who has misrepresented us? The line is long, but I digress.
My purpose in writing this piece is to raise awareness of the reality of my paralysis and ask others if their experience is similar? Or different? I do not believe any one has studied paralysis in ME. I want to do a survey. I want to try and find out who has paralysis and what it is like, how they have been treated by the medical profession, how they cope with it, what it feels like and whether they have been given any medical treatment for it. Or found anything that helps it. Or has it been ignored like with me or downplayed and denied?
For me paralysis is fundamentally at the centre of my ME and quite frankly I am shocked at how it has been dismissed, ignored, downgraded, neglected, misrepresented and overlooked down the years. If only someone would seriously look at paralysis in ME and understand the nature if it, we might find a way forward for the most severely ill. There certainly wont be one all the time we are left out of studies and research because we are too difficult to accommodate or deal with because our needs are so complicated, our symptoms so complex and our health so fragile and at risk of harm and deterioration.
People will never understand the severity and reality of ME all the time our severe and extreme symptoms are overlooked.
Every day of my life begins in total paralysis. I call it paralysis because I simply cannot move any part of me. Even my eyelids are stuck fast in the shut position and no amount of will power will open them. What else can this be then, but paralysis? Yet the neurologist I saw dismissed it as not real paralysis?!!
Paralysis is described as an inability to move one or more muscle groups . On waking I cannot move any, not even my little finger, nor even open my eyelids, not even though I want the toilet or if I have something tickling my face or I desperately need to move because I am in an awkward position.
Something has caused my body to not respond to will.
Eventually over a period of hours I may be able to move. I begin by trying to wiggle the toes of one foot then the other. It is always my toes that respond first. My eyes are always last to be able to open, so I have had to get used to moving about with them shut. I cannot open my mouth or speak or swallow or chew. I am completely unable to indicate that even though I may appear asleep I am actually awake and in physical distress, needing help.
The paralysis I experience in sleep is always total, all of my body. Intense numbness accompanies it too, along with shaking spasms as I finally try escape from it's clutches. Pain too is intensified , along with headache. I am gaspingly thirsty. Consciousness awakes with a start, but my body seems to keep on sleeping. My breathing is even and automatic like in sleep, often through my nose as I was trained to breathe this way. It is as if my body is still asleep but I am awake. I have started every day like this for almost 2 decades now and it is often afternoon before I can finally move enough to sit up, walk a few steps with help and get to a chair. Yet I cannot support my back upright and have to lean forward away from upright as cannot lean against a chair for physical support due to severe pain and pressure sensitivity. I cannot tolerate contact with my head and neck against any surface.
Still I cannot bear conversation. I stare unable to focus, my eye muscles still paralysed. My eyes remain painful and struggle with focussing all day. My sight is blurred. I have double vision. My noise sensitivity is increased and the paralysis although it has shifted in some groups of muscles enough for me to get to the next room, has not left me, it never does, I remain very close to near complete inability to function and can return at any moment more severely.
This is not the only sort of paralysis I experience though.
Once up and with limited movement, I can suddenly feel my limbs becoming numb and lifeless. I often lose feeling, sensation, proprioception ( bodily awareness of the limbs) and my hands, arms and feet lie lifeless, useless, unable to feel or move. They have no use. This may be for an hour or several, it may be for days or weeks even. It may be more predominantly one sided, it can be left or right and it also creeps into my face so that I am palsied, my mouth will not smile on one side. My eyeballs swell and feel numb and I stare like a fish. I have no control over this. It comes and goes as it will.
If I sit too long in one position my body moves closer to paralysis and inability. If I lie down I get paralysed a lot quicker than upright. The nearer I am to sleep the nearer I am to full paralysis, but it can come on totally when lying down, just by trying to relax or rest. It appears to be rest and relaxation of muscles that trigger the whole body paralysis. But I have become aware that there are other triggers of the limb paralysis: being too cold, being exposed to loud noise or any noise that I experience as too loud, doing too much, sitting to long, overuse of a muscle and possibly certain foods too, though I am not certain of this one as it could be post- exertional reaction to a different trigger.
Paralysis then is central to my existence and dominates every movement and every moment of my life. I am in a constant continuum with paralysis either moving towards it inadvertently or trying to move away from it till it hijacks me again.
Surely you would think that such serious and extreme symptoms and bodily dysfunction would have been properly and thoroughly investigated, treated with concern? Yes, you would think it, but in fact the opposite has happened.
Initially there was some interest in my symptoms, though at this point I don't believe I was, though suffering from severe shooting pain, pins and needles and numbness, exhibiting the same levels of paralysis. That came after they gave me a high dose of Ametrypteline , whilst pretending it was a small one for pain, believing I had depression, which I insisted I did not have. First I had a nerve conductivity test done and an MRI on my brain, which apparently showed up nothing. At this point I was told that there was nothing seriously wrong with me and all I was experiencing was just discomfort. This was a total denial of the extreme agony I was in.
Now I know that you have to have the right sort of MRI scan to show up dysfunction in ME. Back then I trusted people to know what to look for and what tests to do. I now see how naive and unaware we were. To describe my reality so dismissively was shocking. They were not experiencing it so they could not imagine the agonising constant stabbing burning, throbbing, shocking amount of pain I was in, nor the pins and needles, the skin crawling irritation, the weakness, the loss of function, the headaches, the nausea, the falls as my body stopped working. They could not imagine it nor could they believe me nor accept it so they negated me and my paralysis along with it.
When I said I cannot stand, I was told I had lost confidence in standing. I could not bear the pain. I blacked out, I felt peculiar. I fell over. I could not move. That was my denied reality.
Much later I saw a second neurologist. The first had already declared me wrongly depressed. When I said I had tinnitus, the doctor wrote on the referral that although I said I had tinnitus, he said I had depression. I was treated very dismissively as a result. The second neurologist actually misrecorded what I said and some of the test results, saying there was nothing seriously wrong and all I needed was reassurance. He said that in his opinion I did not have proper paralysis. Perhaps he would like to try living like this, unable to move, before he decides what true paralysis is. Where I expected help, support, investigation, explanation, I got negation and derision and misrepresentation. I was in the Psychiatric bin as far as neurology was concerned. Just not interested.
Some time later I lost the complete use of my right hand constantly for 6 months which was unusually long. This was more interesting because it gave me a tiny clue that paralysis can be caused by phenomena other than nerve damage. The consultant doing the test was kind. He could see I could not move my hand or fingers. But still the electrical conductivity test was fine. Of course this only shows the nerve pathways are functioning. The problem must be somewhere else.
It could easily be in my brain for example, in the motor control area perhaps? I asked the test consultant doing the test ,as he seemed kind , what could be causing the paralysis, if not the nerve conductivity. He did not say,' This is not paralysis, though he said my consultant would be able to advise me, but he thought it might be linked to how cold I was. My hand and arm were like a block of ice. Unfortunately I had no consultant to advise me, so there was no more investigation or explanation. Once you have an ME or more sinister a CFS diagnosis, they will not look.
My next attempt to gain help led me down a very damaging pathway. I was advised that my paralysis was purely due to hypocapnia ( low CO2 from hyoerventikation ) and with a very simplistic interpretation, ignoring the physical causes for my illness in the first place, I was told if I breathed into a Philipps mask for 4 hours a day , I would miraculously be a lot better. Foolishly I tried to follow the suggestions and was greatly harmed. The mask caused me to collapse and damage my neck, it caused massive hyperventilation, the thing that it was supposedly intending to cure, despite no obvious hyperventilation and caused my diaphragm and back muscles to weaken, such that my breathing is still much worse lying down , more than a year later. I have still not recovered from the harm of a wrong treatment protocol but what was even worse was the blame poured upon me for not following through such a harmful technique which was literally physically impossible for me to achieve, with no risk assessment or consideration or understanding that it might harm me. I since discovered there are other reasons for low CO2 in the body, not just breathing,( in fact I was taught proper breathing techniques many years ago when first ill) for example a poor methylation pathway, the mitochondrial damage, poisoning, even hypothyroidism and other possible reasons for the paralysis of Very Severe ME .
The situation is complex. My advice is always to make sure the people you see truly recognise your physical reality and comprehend the harm they can do with inappropriate treatments, never trust a simplistic view of your situation, the multi system dysfunction is complex . Make sure they understand the dangers of post- exertional autonomic response and definitely check out whether they understand ME as opposed to fatigue. I am still traumatised by my experience from trying to get biomedical treatment. It did not help me overcome or understand my paralysis sadly, I was just disturbingly misinterpreted.
However since that, I have discovered a phenomenon called Hypokalemic or Hyperkakemic Periodic Paralysis. It is triggered by a variety of things including cold, noise and exhaustion / overexertion, sleep and resting. Ring any bells? It is caused by imbalances of potassium in the muscles and blood and the mechanism is a rare channelopathy. There is not too much potassium or too little. It is just in the wrong place at the wrong time.
But what I feel is a fantastic insight, is that the things that trigger my paralysis actually are known to trigger Periodic paralysis, an acknowledged rare disease. So the neurologist was wrong when he dismissed my paralysis as not true. He should have explored my symptom, not dismissed it out if hand because of his views on ME which he considered to be CFS.
Now I am not medically trained, though I am a scientist, a biology teacher as well as a social worker and a counsellor. And it may not be the mechanism for paralysis in ME, but why is that I can see possible links to how I might be becoming paralysed that no one else is willing to make? I simply do not understand how I can have been left like this for two decades with no one able or wiling to investigate it adequately or sensibly or listen to me or ask me the right questions to find out what triggers it or even observe me when paralysed . I do not understand why those who could help do not even want to help me find out if it can be treated. Or explain it to me in a way that makes sense to my reality. What wickedness and travesty is this that I and presumably others are being exposed to? And all because of psychiatric misrepresentation of a genuine neurological disease and wring focus on fatigue.
I know there could be other explanations, perhaps linked in some way to polio or to the dysfunction of the autonomic nervous system or poisoning, but this is the first time I have ever found a pathway for my paralysis that makes sense to me, even if it is not the whole or the correct picture. But really, I should not be left in this state of not knowing why I am like this, having to guess and try to discern my way through it. And nor should any one else.
Why is paralysis not being properly investigated or researched? Probably because it is so often denied and underplayed. But also I think it is because we are so ill that
we live in isolation out of necessity due to our extreme symptoms. Meanwhile there are no adequate consultants (that we have found ) to turn to on the NHS who will look past the ME or CFS label and not interpret it as psychiatric chronic fatigue or just a fatigue illness or do a home visit or even respond to an enquiry.
No one seems to realise that we are being poorly medically treated and are actually seriously ill, if not dying and need medically knowledgeable consultants and thorough biomedical testing like others with extreme, similar symptoms, who gain respect and help, because they have not been so unfortunate as to be given the label CFS or ME .
If no one else will acknowledge it, why shouldn't we?
If you want to share your own paralysis experience contact us by email on firstname.lastname@example.org – letting us know if you are in the UK or outside.
Some questions you might want to think about.
Do you experience transient or complete paralysis?
What is it like?
How have you been treated by the medical profession?
How do you cope with it?
What does it feels like?
Do you know what triggers it?
Have you been given any medical treatment for it?
Have you found anything that helps it?
Has it been ignored or downplayed and denied?
It would be helpful also to know whether you have been given an ME diagnosis or a CFS diagnosis.
Thank you so much,
Linda and Greg Crowhurst.
The quote from Simon Wessely is an extract from the fascinating National Archive
files,which were kindly supplied to me by the Grace Charity. It is part of a letter Simon Wessely wrote to Mansel Aylward, in 1993, at the Department of Social Security, in response to a leaflet the MEA published listing "CFS/ME" under "Other Neurological Disorders."
Dr Wessely stated that "I am disturbed that this disorder should be listed as a neurological disease" and went on to claim that there is "far more evidence suggesting that" schizophrenia and manic depression "have a neurological origin than does CFS/ME."
The "main difference" he stated "between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry."
Earlier this year Professor Simon Wessely was awarded a Knighthood for his services to healthcare, last year he received the John Maddox prize for his courage in standing up for science.
Some of the research, at the time, that possibly Simon Wessely missed, was this :
1988 In conjunction with the University of Pittsburgh, the US NIAID held a large research workshop called "Consideration of the Design Studies of Chronic Fatigue Syndrome". There were participants from the Centres for Disease Control and from the National Institutes of Health. One of the presentations was by Dr Sandra Daugherty, who reported that MRI scans on patients demonstrated abnormalities consistent with demyelination and cerebral oedema in 57% of patients studied. (It was at this conference that it was recommended that the term "CFIDS" be used instead of the term "CFS" on the basis of the immune dysfunction that had been observed in the disorder).
1989 Detection of Viral-Related Sequences in CFS Patients using Polymerase Chain Reaction W.John Martin (Nightingale Research Foundation: 1989: 1-5 1990 Chronic Fatigue Syndrome and the Psychiatrist SE Abbey, PE Garfinkel Canadian
Journal of Psychiatry 1990:35:7:625-626
1992 A Chronic Illness Characterised by Fatigue, Neurologic and Immunologic Disorders, and Active Human Herpesvirus Type 6 Infection D Buchwald, PR Cheney, R Gallo, AL Komaroff et al Annals of Internal Medicine 992:116:2:103
This paper states "Magnetic resonance scans of the brain showed punctate, subcortical areas of high signal intensity consistent with oedema or demyelination in 78% of patients"
src : http://www.name-us.org/DefintionsPages/DefinitionsArticles/Hoopersdescription.pdf
It makes it impossible for my wife to see anyone, yet she is in desperate need of expert help. Except that help is not available. It has not been available for the last 20 years - and never will be until ME is separated from CFS - that is not going to happen any time soon, given the unstoppable ascendency of the biopsychosocial model , which to our horror is dominating the physical research agenda , aided and abetted by the collaboration of AfME , the MEA , clinicians and those screwing it for ME, who should know better, condemning my wife to many more years of suffering, if she survives that long.
The turning point, in my mind, was marked by an article on the Lightening Process in the current issue of the ME Research magazine, Breakthrough.....
Is this what all our struggle has come to ? I thought.
Where is the leadership that is so desperately needed ?