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Riding the Wave; still ( Part 1)

There are many it seems ,still flipping their lid,  over   those who have insisted on using the name ME , as opposed to ME/CFS in Scotland ; their argument goes something like this : ME is not taken seriously by the medical establishment,  Scottish MP's  advise  that their support can  only realistically be maintained if both ME and CFS are acknowledged- and given the context : a heady mix  of politicking  baggage and "background"; this initiative is not just jerking people around, it is a "serious risk" to all that has been achieved .

Indeed, on Oct 24 it was announced that  the Cross Party Group now no longer exists.

I imagine that, like me,  those of us outside the situation find the details difficult to fully get a grip on  ; what we do know is that passions are running high; it is  the most extraordinary situation. You'd expect flags , bagpipes and dancing in the streets, not the place to be in an uproar - with resignations, confusion and  very public conflict.

Actually no. What is going on is terribly predictable. 

Says he, digging around in the bottom of his wardrobe for an old magazine, here it is ! Community Living , July 1991. I used to write for the magazine- which is still going, I am pleased to note -  back in the day, when I was heavily involved in the Learning Disability movement. 

Let me read you this paragraph :

"Is the issue - (apply this to Scotland) - fundamentally about our capacity to cope with change ? We persist with our systems and structures (or lack of them) and it is incredible the resistance to change. Often change which is accompanied by some sort of crisis , results in organizations persisting in digging in, doing "more of the same", though even harder. Lynch and Kordis (1990) write about organisational "stupidity", defined very precisely , as the inability to accept useful information , learn from it and act intelligently. The effect of this, they argue is entrophy - loss of movement - resulting in organisations frantically trying to preserve the status quo, frightened and disturbed by change."

We can all learn a lot from Lynch and Kordis - their book - Strategy of the Dolphin ( http://www.amazon.co.uk/Strategy-Dolphin-Scoring-Chaotic-World/dp/0449905292is a rare  life changer.I have to say I've been well guided by its insights all these years.

Faced with change, as in Scotland, you can either harness group energy - synergy and move powerfully forwards or alternatively find yourself  beating  a  retreat to the lowest common denominator : organisational stupidity - and then - oh dear, here comes the mob,  in a panic - their "decisions"  an ill considered jumble - not reflecting any apparent logic...

Here's the thing  though, tragically when the dust finally settles, its often same old, same old; things limp on much as before- which is not good news for people with ME, more desperate than anyone for  something good to happen.

In Part 2 I would like to go into this in more depth - and ask you some questions. Be warned, they could change your life.










Voices From the Shadows in Hexham

Who am I ?
My name is Myalgic encephalomyelitis
Though I have been hidden
 in a sea of denial, 
downplay and negation
Presented as fatigue ,
 laziness, malingering , 
fear of work and wrong thought.

Who am I?

I am your worst nightmare
Waiting round the corner to assault you and steal your life  too,
Only then will you realise and it will be too late to do anything
That I am so much more than tiredness
I am a long slow torture unto death.

For more information on the Hexham Screening , please see :
http://www.stonebird.co.uk/greg/bootstrap/hexham.html



The agony of living with Very Severe Me



Here is my list :

1 The agony of knowing that I have not had proper , full, intelligent medical investigation of my disease or even proper medical recognition and explanation of what is going wrong with my body after 2 decades of being massively physically and cognitively disabled and very severely ill.

2 The agony of the denial that exists in the medical profession and its wrongful collusion with psychiatry which harms every body tainted with the diagnosis of ME .

3 The agony of denial of responsibility by the government for its fatigue policies which harm people with ME and its continued misuse of the term CFS as equivalent to ME.

4 The agony of having to trust people who do not ultimately have a clue how very ill and frail I am , who can harm me and damage me and not take responsibility for it, hiding behind wrong assumptions, misinterpretation, and personal ignorance or arrogance , ego and self- justification.

5 The agony of knowing that I have been abused by systems and people within them both through ignorance, deliberate ignorance and purposefully, with no power to redress or gain acknowledgement of that abuse.

6 The agony of injustice of no adequate health care for people like me who suffer for decades on end without proper or adequate medical support or knowledge or easy access to genuinely knowledgeable medical consultants aware if the system dysfunction in ME.

7 The agony of not having enough money to pay for the tests, treatments, aids and environmental supports I need to try and protect myself from deterioration.

8 The agony of misinterpretation of my illness by virtually everyone in society.

9 The agony of misinformation presented to the government, the media, society, by the psychiatric lobby and their unquestioning acceptance of it.

10 The agony of knowing that millions of pounds have been thrown away on misguided psychiatric therapeutic interventions and research that harm people with genuine ME.

11 The agony of misrepresentation of psychiatric fatigue as ME.

12 The agony of knowing that there are very few specialists for people with ME who genuinely know how to medically help people with ME.

13 The agony of knowing that the new wave of doctors are focussing on fatigue illnesses and there will be fewer doctors understanding and investigating the symptoms of genuine ME as a neurological disease.

14 The agony of experiencing first hand the denial by the neurologists who should be investigating and researching ME, but side, instead with the psychiatric myth and abuse patients by neglect.

15 The agony of not knowing who to turn to, who to help me, not knowing who is safe to turn that they will not further harm me by lack of knowledge or misunderstanding.

16 The agony of knowing that I have been damaged physically time and again by people who think they know what they are doing and have not understand my illness, traumatising me and deteriorating my health further without redress.

17 The agony of torment I experience from every single normal thing .

18 The agony of living in an ordinary environment that has become utterly hostile and damaging to me inadvertently , which is daily ,moment by moment, harming me just be my existing in it.

19 The agony of knowing that if I were a dog I would have been put down decades ago because of intolerable suffering.

20 The agony of almost two  decades of my life stolen from me by a damaging profoundly disabling physical illness that is being wrongly treated by the medical profession in the UK.

21 The agony of seeing friends I have come into contact with down the many years of illness, deteriorate and die in agony and untimely fashion.

22 The agony of knowing I have brought my loyal, loving, husband into a world of constant agony, despair , denial and institutional abuse that impacts his life daily as well as mine.

23 The agony of knowing that we are poor because I am ill and need my husbands love care and support to survive, so he cannot earn a living for us and I cannot earn a living in this dreadful state.

24 The agony of living with someone I love yet whom I cannot bear to touch me or speak to me or share what he is interested or learning or concerned about with me, because it will hurt me and deteriorate me to try and engage with him.

25 The agony of being in sheer physical constant pain and so damaged by complex symptoms that every single form of communication is broken between me and the world.

26 The agony of knowing that inside I am bright, intelligent, knowledgeable, fun, compassionate, interested, but that this is hidden and blocked by a wall of physical pain, nightmare paralysis and numbness, severe cognitive impairment, massive environmental hypersensitivity and an inability to connect and communicate and especially receive incoming communication from any source.

27 The agony of knowing I am being stopped from being who I am by profound physical torment and suffering beyond description but mostly by medical neglect and political power games.

28 The agony of knowing that I don't know how to bear it and there is no one who can help me or offer me solutions that stop the pain especially from noise that harms me so completely.

29 The agony of living in total isolation.

30 The agony of having no safe place in my home that is not violated by noise and other peoples lives and impact, so I have no safe space to cope with the profound torment that I experience.  

The Agony of Caring for Someone with Very Severe ME



There is an agony in caring for someone as ill as my wife, who has Very Severe ME ; I have made a list :
1. The agony of my presence, my voice, my thinking even, my attempts to try and be quiet, increasingly being too much for her to bear.
2. The agony of her total pain, paralysis, deep isolation from anyone and everything, the absolute littleness of her life.
3. The agony of the immensity of the illness, in its face we are only a dot - at least that is what came to me in a reflective drawing recently...although a  powerful dot of fire, that will never give up.
4. The agony of the hours spent coping, my wife never comfortable, never finding any relief anywhere, moving from lying to sitting, always being pulled back into paralysis and exacerbation of symptoms.
5. The agony of feeling less and less confident, hopeful, certain of a cure one day.
6. The agony of getting older, it's been almost 20 years now, realising my body is slowing, is not as strong as it used to be, to help.
7. The agony of witnessing the psychiatric lobby still going from strength to strength, in contrast to our diminishing situation .
8. The agony of being so alone; knowing there is not one ME group that is waging an effective fight.
9. The agony of fighting so hard, yet the illness is still left untreated and is taking its tragic course, regardless.
10. The agony of  my wife whispering to me, at 2am that the pain is too much to bear.


Pragmatism : Why the ME Leadership is so wrong


There's an argument that goes something like this :

In the real world almost all ME/CFS research is carried out on people with Fukuda CFS ...the only way to sort out the ME/CFS mess is to identify clinical and pathological sub-groups under the ME/CFS umbrella.

We could identify it as the pragmatic argument.

Except, what has " pragmatism" ever done for us ?

In the USA, decades of “pragmatism” has arguably led to the 1% growing richer and the remaining 99% fighting for their  scraps. As Fishoutofwater comments :

What have "pragmatic" Democrats done for us in the past decade? They signed off on a disastrous war in Iraq that drained the treasury leaving America trillions in debt. They signed off on deregulation of banks and financial firms leading to the greatest economic failures since the Great Depression. And they signed away our freedoms when they supported the Patriot Act.


"Pragmatic" Democrats ..sold our health care out to insurance companies. Health care costs continue to spiral out of control while quality drops because the middle men are draining off resources and stopping single payer health care.

We can't cut greenhouse gas emissions because "pragmatic" Democrats have sold out to big coal, big oil and big polluters. Texas is dying in a 500 year drought, but the pragmatists don't have the courage to speak of climate change.

It was “pragmatists” who drew up the CDC criteria.

I wonder what those founding fathers from long ago, : Samual Adams, John Adams ,Thomas Jefferson and Benjamin Franklin would make of America today ?

No one would call them pragmatists - radicals !

It is America that is responsible for perpetuating the neoliberal orthodoxy of deregulated financial markets and unfettered corporate power around the globe, that has brought us all to the brink . Few have been greater  victims  of the rampant  corporate    wickedness , than people with ME; the giant insurance companies making  damn sure,  that  no one with ME gets treated.

CFS” is the greatest medical scandal in history.

Give me leaders that stand for something. “ cries Fishoutofwater. Yes I shout in
 reply, although no one hears me.

If ONLY our leaders in the ME Community stood for something !!! There is not one leader in any of the big ME Organizations that I know of speaking up for ME – apart from Simon Lawrence of the 25% Group !!!

The big ME organizations have compromised the truth for decades by not standing up to the psychiatrists. Those who have not compromised, like Simon, have simply been sidelined .

And now those same “leaders” , shame on them, are advising “pragmatism” …....

The radical bravery and leadership shown by Scotland inspires me to keep waving my tattered little flag in the air : “No compromise !!” it has read, all these long years.

You see, as Henry Rollins says : When you start to doubt yourself the real world will eat you alive.












Please support Jessica

This young woman, Jessica, with Severe ME, has been taken into hospital in much pain - do watch her brave, heart breaking, powerful video - and please  send messages of support, if you can :



ME, CFS, ME/CFS: Importance of Accuracy and Consistency in Terminology, Definitions, Diagnoses etc.




CFSAC Testimony - Jill McLaughlin - October 3, 2012

My name is Jill Mclaughlin. I have been involved in advocacy for 15 years and have attended many conferences and meetings. Once we realized that our daughter had ME, not CFS, I became an ME advocate.

For the last CFSAC meeting, registration required an "organizational affiliation." The vast majority of patients do not belong to these groups. By the time it was corrected, all of the spots were filled - by these ME/CFS groups. This hardly gives a fair, unbiased representation.

CFSAC

The CFSAC website states that the purpose is to advise "on issues related to Myalgic Encephalomyelitis and
CFS (ME/CFS)."

It is unclear as to what this means. A name change? The purpose of a name change has always been to eliminate  the trivializing and demeaning CFS, which this will not do. We do not need 2 names.

There is no WHO recognition or ICD codes for ME/CFS. The CFSAC Charter and by-laws specify CFS, not ME or ME/CFS. An advisory committee should advise, not implement or change policy or terminology and meanings.

For example, Fibromyalgia and RSD are pain syndromes, with overlapping symptomatology. But an FM committee should not take over RSD, become about RSD/FM, or change or combine terms and diagnoses.

Case Definitions

CFS should not be combined with, called, classified or coded to ME.

ME has been classified by the WHO as a distinct neurological illness since 1969.

The CFS definition is fatigue plus 4 minor, non-specific symptoms. This hardly describes or identifies a neurological illness.


In fact, CFS specifically excludes neurological illnesses.

Also, ME and CFS are in different Chapters of the US ICD 10-CM, which specifically excludes R53.3 CFS from G93.3 ME, and vice versa.

That which is an exclusion cannot be an equivalent.  So according to CDC and NCHS, ME and CFS are different.

This ME=CFS=ME/CFS paradigm is the false illness beliefs being espoused by these "ME/CFS" groups, such as the CFIDS Association of America, Pandora, Phoenix Rising, Coalition 4 ME/CFS etc.

US ICD Coding

CDC and NCHS currently have ME and CFS accurately - and separately - classified according to their respective case definitions.

CFS is a syndrome, which is defined by symptoms. A disease (such as ME) is characterized by symptoms plus objective and measurable findings. Fatigue has always been ill defined and has no objective markers.

Whatever CFS is, the CFSAC can ponder, rename, redefine; but it is not ME and should not be combined or connected to it.

There are also serious clinical implications of combining, conflating or mislabeling ME and CFS. For example, exercise is recommended for CFS, but is harmful - or potentially fatal - for ME patients.

The use of blended or combined terms and diagnoses creates mixed cohorts, yielding inconsistent or meaningless research results.

Yes we need a new paradigm: ME is ME and CFS is CFS. Fatigue research will never help those with serious neurological impairments.

Yet ME/CFS case definition is on the agenda.  And the ME/CFS groups, under the guise of the Coalition 4 ME/CFS, again this year continues to push NCHS to code CFS to ME, when this proposal was rejected last year.

Coding and classifications are scientific determinations, not consensus issues, which are based on opinions and preferences.

For example, infectious agents have often been associated with Schizophrenia, but could advocates lobby to re-classify Schizophrenia as an infectious disease? I doubt it.

WHO Classification

There has been a good deal of misinformation on the WHO classification of ME and CFS.

CFS is not classified in the Tabular listing, but is only in the Alphabetical Index, referenced to ME.

WHO does NOT say that ME and CFS are synonymous. WHO gives various possible relationships between terms in the Alphabetical index and the term to which it is indexed.

One possible choice is "an imprecise and undesirable term." Given the stigma and derision that CFS has caused, it would be hard to disagree with this.

HHS

All HHS agencies correctly use the term CFS, except NIH-ORWH and CFSAC.

Patient groups can call it or make up whatever they want on their blogs and websites, but federal agencies cannot summarily change, substitute or make up terms and meanings.

HHS must adhere to the US Department of Health and Human Services Policies and Principles for Assuring Scientific Integrity.


 http://www.cdc.gov/od/science/docs/Scientifc_integrity_principles_12-19-11.pdf

HHS requires that all agencies, employees, and committees must comply by adhering to official rules, regulations, policy and procedures, which must include the recognition of official terminology, criteria, classifications, diagnoses etc.

Therefore, CFSAC should as well.

Respectfully Submitted by Jill McLaughlin

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.

The Pseudo ME Sufferer Movement

Mike left a great comment today on my blog post - The Hourglass Model :


"If you remove the disease from the "fatigue", which is what CFS has become (was arguably intended for), then yes, of course it's psychiatric. There's no such thing as a disease without any evidence/signs of disease process. Simple! No coincidence all the signs and evidence of ME have been struck from the CFS definition by the "international CFS study group" (mostly psychs who believed ME was hysteria) and their mates.

Before the CFS travesty came along, this was always known to doctors, and diagnosing "fatigue" as if was an would have been seen as madness. As a result we have a bogus illness which is just basically a misdiagnosis and get-out-of-jail card for psychiatrists, lazy doctors and insurers/state welfare gatekeepers. 

It very much helps to perpetuate the status quo, as no research findings in a dustbin diagnosis can ever be officially "significant" with respect to disease. As soon as something which is very striking is found, it gets automatically dismissed because CFS isn't defined to accomodate it; you would need to revolutionise CFS with a new definition and name to do so which would destroy the field of CFS quackery.

And lastly, the so-called "heterogenous" nature, which is an understatment, makes doing replication studies difficult as there's no reason why two cohorts would be the same. It encourages duplicity and bad research.

The idealists claim to be pragmatists in studying the suppposed whole of CFS to separate it out, but we all know what the result of being in that endless queue and waiting for "fatigue" to be understood is. The result is more decades of timewasting, of no parity and a trickle of sidelined good research among the bad while severely affected sufferers progress and die horribly in a society that permits the abuses of pwME to continue.

Mike "


Mike is right , it is very clear that ME needs to be separated from Chronic Fatigue and that those currently diagnosed with the meaningless, non-disease CFS are given an an accurate diagnosis to determine what is really wrong with them.

The extraordinarily detailed ICC Pimer lays bare the ME- CFS issue and sets out exactly what an ME service should look like . 

It is what we are fighting for - have been for this last 19 years.

But...

Again and again our efforts are muddied, watered down, diluted by a seemingly massively powerful  "pseudo" ME sufferer movement   (I am a web designer, pseudo classes are a big deal ) -they want a Fatigue Service by any other name...goal setting and management.

The most ill are the most hidden, the pseudo ME movement is a much more visible, vocal force, all too prepared to compromise, claiming , as Mike  points out  so well, to be "pragmatists".

In my experience they constitute the biggest  , most frustrating block to progress.

Those who refuse to challenge the CFS label, who persist in using it, those clinicians, - and  that is most of them, who use the term CFS, those ME Groups who claim that ME is on a continuum with CFS, they are the ones perpetuating my wife's heart rending suffering, by their deadly ignorance.

Do they not see what they do ?

She is in SUCH agony, my wife. I am so tired, it was a terrible night last night. No one though, could even have a clue how bad it is...it's much much worse than anyone could possibly imagine, apart from those going through it themselves.

These , the true ME sufferers and carers,  are the ones most hungry for change; their anger at what is going on is white hot.