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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 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?

How to separate ME from CFS

The Hourglass Model
Greg Crowhurst 21st September 2012

You have to be feeling some kind of hope right now, what with that rocket blast, the Lipkin  Report, Mansel  Aylward on the doorstep  apologising, the other day ,  to a group of disability campaigners   - for the biopsychosocial model and now this from the 25% Group and The Young ME Sufferers Trust , in Scotland  :

Patient representatives at the Cross Party Group on ME today delivered an overwhelming vote that ME, as a discrete neurological disease, must be treated separately from other fatiguing conditions.

In the face of a massive diagnostic muddle (the label 'CFS' being a wide term with various different diagnostic criteria) any specialist clinics set up in
Scotland should identify and treat people with ME, and not a spectrum of fatigue states.

The votes cast were as follows:

For ME: 27 votes

For ME-CFS to encompass a range of fatiguing conditions: 5 votes. ( emphasis)

At last !

The question must  be asked though  - why was it not a 100% vote ? Who on earth with   ME  ,  would not want to make the separation between their neurological disease  and CFS ?

CFS, ("Complete Freaking Scandal") is  a hopeless botch-up ,    a foul muddy term that incorporates a commodious  range of illnesses and conditions right across the Chronic Fatigue/ Mental Health/Physical disease spectrum; it needs getting rid of.

CFS IS NOT  a disease category in its  own right.

The literature is sick  with references to  "Severe and Complex CFS" -but it is important to know  that these terms are used anecdotally ,that is all - possibly to describe Severe ME by some patients or doctors, but we will never know for sure until a proper diagnosis is performed, using the ICC Criteria - they could just as well be referring to a mental health need or some other as yet undiagnosed and untreated illness.

 CFS, that horrible malodorous label,  does everyone a disservice.

The sooner we are rid of its nasty  stink ,  the better . Hurrah for Scotland the brave !!

If only patients and clinicians  everywhere could  grasp this point, after correct diagnosis using the ICC Crietria : there is  no need whatsoever to use "CFS 

 To still carry on using the term "CFS" within an ME  Service, once you have diagnosed what is actually wrong with patients   makes a nonsense of using the ICC criteria !

Use of the term "CFS "or "Severe "or "Chronic " CFS by anyone simply indicates ignorant, poor diagnostic criteria .

That said,  the situation , as they say in Scotland is a "diagnostic muddle"  at the moment .

 To sort it you need someone who has the knowledge and the wherewithal to separate out who has Chronic Fatigue - a mental health condition, who has ME, a neurological disease and who has some other  undiagnosed illness or condition.

Out of  our local experience , fighting day and night for a medical ME Service , here's  a model for doing just that :

 The  "Hourglass Model" :

A response to Mansel Aylward's apology

I have just posted this on Black triangle :
Before the Coalition came to power , Steve Webb, Liberal Democrat work and pensions spokesman, commented in relation to the Labour Government’s Welfare to Work programme :
“The rhetoric sounds great – ‘We’re going to focus on what you can do and not what you can’t do’ – but we all know that what that really means in practice is getting tougher and setting the bar higher.” He added : “What worries me is the idea of a future Tory government going further, faster down this track and already budgeting for millions of savings, saying there’s obviously people who don’t need this money.”
How ironic !
With little protest , Labour’s Welfare to Work programme found seriously ill people, people with debilitating conditions and serious disabilities illegible for Employment and Support Allowance (ESA), the benefit that replaced Incapacity Benefit in October 2008. That is because they had been subjected to the notorious Work Capability Assessment (WCA) which took little account of variable symptoms, generalized pain, exhaustion or the underlying seriousness of a person’s condition.
According to a Citizens Advice Bureau report , those seriously ill and disabled people , found fit for work under the last Government and denied ESA , were subsequently written off, just left to cope with greatly reduced benefits on Job Seekers Allowance and little support. (Source : Not Working . CAB Evidence on the WCA.)
Yet introducing ESA and the WCA in 2007, Peter Hain, Labour, described them as “A new, progressive vision for our welfare system .”
As Debbie Jolly points out, up until then campaigners, protesters, advocates, activists and Centres for Independent Living (CILs) had managed to achieve :
The Independent Living Fund (ILF)
Disability Living Allowance (DLA)
Incapacity Benefit
Access to Work
Direct Payments
The Disability Discrimination Act
All the above achievements, the envy of the world, have now been drastically cut back and replaced.
Labour’s (and now the Coalition’s) extraordinary counterintuitive reasoning , towards disability, has its roots, says Jonathan Rutherford in the American right’s philosophy that the poor are the cause of their own poverty because they fail to take advantage of the opportunities “available” to them..
This all began in 1994 the Conservative Government brought in UNUM, the giant American Medical insurance Company, to advise them on welfare reform, a member of that group was Mansel Aylward, who in 1999, as Chief Medical Officer at the DWP, devised the new Personal Capability Assessment (PCA), contracted out to the American Corporation Atos Origin, where the ” emphasis was no longer on entitlement, but on what a person is capable of doing.”
The intellectual basis behind the PCA was UNUM’s “The Scientific and Conceptual Basis of Incapacity Benefits “, written by the apparently apologetic Mansel Aylward, which is based upon the biopsychosocial model of illness, designed to “liberate” the disabled from the ” medical model” . According to the biopsychosocial model, under which untold tens of thousands with people ME have suffered horrible abuse and even death : ” Disease is the only objective, medically diagnosable pathology. Sickness is a temporary phenomenon. Illness is a behavior social phenomenon rather than a health problem. The solution is not to cure the sick, but a “fundamental transformation in the way society deals with sickness and disabilities. ”
The transformation is this : ” Sickness is a social and cultural phenomenon rather than a health problem. The solution is not to cure the sick, but to transform the culture of welfare. No one who is ill should have a straightforward right to receive benefit.”, this extreme agenda ” was adopted by the former banker Labour brought in, David Freud , now Lord Freud , Parliamentary Under Secretary of State (Welfare Reform) .
Pushing the neoliberal agenda to triumphant heights, the Coalition maintains says the “only” way to save money is to slash welfare spending.
Effectively as many claimants as possible must be bumped off benefits. The disabled have been thoroughly demonized; the need to reduce ” welfare dependency” is shouted out , as loud as possible, to all who can hear. The consequences have been terrible, with the disabled bearing the brunt of cuts , as Patrick Butler writes :
Savage cuts to social benefits have shredded the welfare “safety net” and left many disabled families in a “struggle for survival”, according to a detailed study of the impact of the government’s austerity programme. It calculates that disabled people and their carers have seen their income collectively cut by £500m in the past two years, leaving many increasingly financially impoverished, socially isolated, and at risk of declining mental health.
Many disabled people’s quality of life will continue to deteriorate over the next three years, warns the study, as a further £9bn of predicted cuts todisability support are rolled out and local authority social care budgets shrink further.
“Although nearly everyone faces tough times in this current economic climate, disabled people are hit particularly hard as a result of lower income, higher costs, fewer support services and unpredictable health conditions,” the report, published by the thinktank Demos and Scope, the disability charity.
Denied even the basic right of proper medical care for decades , under the biopsychosocial regime that has now gone global, people with ME know more than most, how evil this regime is.
Does Mansel Aylward sleep well at night, I wonder ?
The experience of people with ME , who have suffered for decades under the psychosocial domination of the corporate medical insurance industry ,offers a stark insight into the smoke and mirrors that passes for Mansel’s “21st Century ” disability policy :
(By the way, only a terminally ill cancer patient or someone dying of AIDS what the degree of suffering is like in ME, there is no cure, no known treatment. And it can and does kill.)
The process is this :
In ME :
Change the Name : ME to CFS
Change the Criteria : Virus to Fatigue
Simplify the Criteria: So that ME is diluted down and is lost in an irrelevance of Fatigue and mental health jargon.
Change the Focus : Biomedical to Psychiatric
Move the Definition : To incorporate people with a mental health need.
Create a skewed approach : Based solely upon a limited psychosocial view of ME
Create Systems to sustain the flawed Ideology : Created vy the medical insurance industry, who have a massive financial stake in denying the physical reality of ME, either covertly or overtly
Set up psychosocial clinics that focus purely on mental health strategies and deny the physical reality of ME, staffed by workers who believe that ME is not a physical disease.
Ignore genuine need by switching the focus and making the person’s reality irrelevant: Do not look at ME within the context of a physical, untreated disease. In ME switch the focus from the real issue of illness, to rehabilitation and away from the physical needs of the person.
The outcome is a denial of people’s reality, the misapplication of Cognitive Behaviour Therapy and the channelling of resources away from where they are needed. The present reality of ME : ME is treated as if it is a mental health issue. The person with ME is subtly blamed for being ill and not doing enough to get better Their physical health is denied. Their level of disability is denied Their needs go unmet and people with genuine ME are neglected unseen and left without appropriate medical support leading to a never-ending life of illness and disability, unsupported by the social and medical systems that should be in place to help them.
In PIP :
Change the Name : DLA to PIP
Change the Criteria : What you “can’t do” , to what you “can do” Simplify the criteria: So that disability is watered-down and the complexity of disability gets lost in irrelevance. In truth disability is complex and needs detailed understanding
Change the Focus : Disability to Ability.
Move the Definition : To exclude the least disabled and possibly the most disabled,who cannot achieve independence, or those in residential care, from getting Benefit.
Create a skewed approach : Based solely upon a limited social view of disability, ignoring the medical and environmental aspects.
Create Systems to sustain the flawed Ideology : There are vested interests behind DLA policy development , who have a massive financial stake in denying the physical reality of disability, either covertly or overtly.
Set up a flawed Consultation Process, after already drafting the Bill to change DLA. Set up ATOS with a financial incentive to remove people from benefits .
Ignore genuine need by switching the focus and making the person’s reality irrelevant: Do not look at the impact of disability upon ability.
In PIP switch the focus from the real issue of disability to an out of context ability. The outcome is a denial of people’s reality, the potential misapplication of Cognitive Behaviour Therapy and the channelling of resources away from where they are needed.
The great error of PIP is looking at ability and denying physical disability . The inevitable result is that disabled people will be viewed , like people with ME :
• as not trying hard enough
• as being more capable than they are
• as having a false “perception” of disability
• of wanting to be disabled
• of not needing the help they actually do need
There is a place beyond anger. While my wife sits, hunched in pain, while there is nothing I can even make her to eat, while she sits tormented by noise, by movement, in silence, it is to read that Mansel Aylward has offered some kind of door step apology – while inside UNUM are as busy as ever handing out branded flash pens and goody bags.
Greg Crowhurst (c) Stonebird 2012
Citizens Advice , Not Working , 2010
Peter Hain, Labour and the Sick Note, New Statesman, 27 Nov 2007
Jonathan Rutherford, E pluribus Unum, The Guardian 17 March 2008
Jonathan Rutherford, The welfare reform bill’s hour of need, The Guardian 22 June 2009

It has to be ME - not CFS !!!
Greg Crowhurst 16th September 2012

The separation of ME from CFS, so  ending the decades of  injustice and suffering caused by that  label to people with ME and their families, is , in my opinion, the greatest issue facing people with ME right now : 
  1. ME and CFS are not equivalent terms. ME is a neurological disease, CFS is a made-up term that encompasses a wide range of conditions.
  2. CFS includes Chronic Fatigue, a mental illness, as well as ME, a neurological disease; it is therefore unsafe, unreliable and unrealistic .
  3. ME does not exist on a continuum with Chronic Fatigue or CFS any more than Cancer , or Multiple Sclerosis does.
  4. ME is not a fatigue illness ,  in the way it is contextualised in CFS; you don't even have to have fatigue to have ME.
  5. A service cannot treat WHO-ICD-10-G93.3 ME/PVFS patients while also using the CDC/Fukuda CFS definition, without doing a gross disservice to taxonomic logic .
  6. The International Consensus Criteria (ICC) is very clear that 'fatigue syndrome' or 'chronic fatigue syndrome' are not to be conflated with ME/PVFS WHO-ICD-10-G93.3.
  7. The WHO have repeatedly clarified that diseases cannot be encoded under more than one rubric: for example on 4th February 2009, Dr Robert Jakob, Medical Officer (ICD), Classifications, Terminologies and Standards, WHO Headquarters, confirmed:
    CFS is a broad umbrella. This needs to be clarified. It is not possible to make a deduction from CFS. Volume I is the relevant volume for ME. ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term CFS in the ICD Index is merely colloquial and does not necessarily refer to ME. It could be referring to any syndrome of chronic fatigue, not to ME at all. ”
  8. The  hallmark symptom of ME- the likely Post Exertional impact of any activity is ignored by CFS; the hypersensitivity, the neurological , the endocrine, the cardiac and autonomic dysfunctions are also  ignored.
  9. The techniques used in the therapeutic treatment of Chronic Fatigue are not just inappropriate but  potentially damaging, dangerous -even life-threatening to someone with ME.
  10. The criteria for ME are very specific,whereas the CDC/Fukuda criteria for CFS are vague, undefined, unreliable and far too broad to be of any practical value.
  11. People with ME are seriously deprived of proper medical tests, treatments and research because of the imposition of the CFS label upon their disease.
  12. The CFS label causes countless  daily cases of psychosocial abuse and needless suffering to ME patients.

No words anymore

There are no words anymore. We sit in silence, Linda increasingly unable even to bear my presence, so screamingly hypersensitive is she  to noise, light, touch, movement. The red areas indicate raw
 pain :