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Dashed hopes and inappropriate services.

Stonebird

What I want for Severe ME, yesterday, today and tomorrow...

Linda Crowhurst

I wrote this list of needs about eight years ago. What is devastating about it is that not one of these items has been fulfilled and enteroviral ME seems to have almost completely disappeared from recognition .

 Surely it is time we had accountability and responsibility for the serious medical neglect of some of the most severely ill and isolated people in the country. 

When will the charities achieve any of these goals by seeking and speaking the truth required to get change?

1 Universal respect that ME is a real, physical disease, not a syndrome or a fatigue state, by honouring it's proper name - Myalgic Encephalomyelitis.

How many clinicians, professionals, charities, groups, individuals actually do this?

2 Appropriate full criteria that succinctly and clearly identify the disease.

How many different criteria and poor criteria are being used to supposedly identify people with ME, thereby misdirecting understanding and recognition of ME as a discrete disease? How many people are willing to settle for too little?

3 A biomedically valid diagnostic tool for identifying ME clearly and correctly.

How will this ever be identified and found, all the time there is no agreement of what the illness actually is and so many people have different views and focus and use different identification criteria,such that there is no clarity of patient pool in research?

4 Acknowledgment of all the symptoms and system dysfunctions.

How can the disease Myalgic Encephalomyelitis ever be recognised, till all the symptoms are acknowledged as part of the disease and used in the identification criteria? How can it be that the more severe and extreme symptoms are simply ignored or downplayed by medicine and research?

5 An honest and realistic prognosis.

How can people have an honest prognosis all the time a psychosocial model of interpretation denies the true reality of this serious and life threatening disease? And being positive is used to deny the true seriousness of the illness and its unlikelihood of recivery without biomedical treatments?

6 Tests and scans that will show up the dysfunction that exists at a cellular level and system level.

How can anyone get the appropriate investigations when NICE proscribes even basic identification tests that might help? Why is it that eight years on we are no nearer, in fact, we seem further away from this ever being a realistic option?

7 Government funded research into the physical underlying causes of ME.

How can this possibly happen all the time that people attending the CFS fatigue clinics are the pool of research patients and the most severely ill are medically neglected and ignored and 'fatigue, is described as the primary symptom?

8 The development of new biomedical responses and treatments for ME.

How can this be possible, while NICE still sticks to its biopsychosocial model of response and its wide interpretation of a fatigue illness, rather than providing the much needed biomedical response you would expect for specific enteroviral disease and blocks the possibility of reconsidering biomedical research for another five years by putting ME on the static list?

9 Appropriate aids and equipment, appropriate for the level of extreme hypersensitivity people experience, created and provided on the NHS.

Why is there no apparent understanding of the very particular aids required for the extreme and unusual level of hypersensitivity people experience with ME? Why has there been no specialised service created or body of knowledge amassed for technicians to understand the unusual and specific needs in order to create aids and equipment, using special materials that would actually be comfortable enough or provide protection from the environment, especially for the most severely affected? Why are these not freely and widely available for people in such agony that living has become a nightmare of physical persecution by the ordinary environment? Why isn't this a priority?

10 Well-trained professionals from all agencies involved, who know and understand both the physical disease, the potential level of disability and its impact and how to communicate and support people with severe ME,not make them more ill.

Why are services across the boards still not understanding or providing appropriate level of care, medical and social? Why has the psychosocial lobby been allowed to spread its misinformation of ME and its misinterpretation of ME as chronic fatigue, rather than a serious neurological disease, caused by an enterovirus, so effectively across the country, in collaboration with some of the major charities, leaving practitioners and carers alike confused and lacking in the specific knowledge required to safely help people with ME?

11 Systems, forms, appointments and procedures that take into account the level of illness and disability people have and make life easier not harder to manage?

How can this possibly happen, all the time the psychosocial lobby hold such power and influence and continue to spread misinformation about ME as deconditioning and wrong thought?

12 An awareness that home visits and a flexible approach are generally essential in order to see a person with Severe ME?

How many people can say that this is the norm? How can the most ill get access to basic dental and optician care, let alone GP or specialist medical care at home, when there is not enough interest in this illness within the medical establishment, home specialist visits are impossible unless privately funded and professionals simply do not have the required understanding, in general, to know how to safely engage with people?

The travesty of this document is it was written with hope. Hope that the interest and care was out there somewhere. The hope that if the need was articulated people would surely jump to provide it because the need is extreme and the case for change dire and long overdue, even then.

Shockingly nothing has really changed for the better in the last eight years. In fact, from where I am looking, living now with very Severe ME, it seems that the situation has got much worse. The psychiatrists are more entrenched and powerful than ever, the charities more compromised, the real disease of Myalgic Encephalomyelitis almost completely lost in a sea of fatigue misrepresentation.

Until there is a removal of psychiatry from first hand involvement in ME and a firm separation of the charities from psychiatric collusion and until a new separate biomedical pathway is set up for genuine ME sufferers and the medical profession becomes interested enough and genuinely concerned about this disease, there will continue to be confusion and no real hope of adequate and safe medical services for the most ill and seriously neglected neurological disease: MyalgicEncephalomyelitis, which is most certainly not, Chronic Fatigue Syndrome.



Concerns about Biomedical CFS, not ME Research


Stonebird

Greg and Linda Crowhurst
 August 2014

What is happening to "Myalgic Encephalomyelitis ( ME)?

The John Richardson Group clearly states: Enteroviruses “were and remain the cause of Myalgic Encephalomyelitis”..

Unfortunately,  since ME was mislabelled as Chronic Fatigue Syndrome and the medical profession around the world " accepted without critique, the change from WHO G93.3 to CFS." ( John Richardson Group) it has become a basket diagnosis for many different conditions, focusing on a broad fatigue criterion, rather than the true elements of enteroviral ME. Since then it has changed from a serious, life threatening disease, found in epidemic form to a "vague concept encouraged by the State, research funding and designated clinics" (John Richardson Group).

We fear that the disease, as originally defined by Ramsay, is fast becoming an umbrella term, even if the name ME is used, subject to many different interpretations, incorporating a wide range of meaning and poorly defined conditions, now confusingly and loosely defined as "CFS", "CFS/ME" and "ME/CFS", poorly tested and inadequately diagnosed.

The name itself is being misinterpreted to have a range of meaning, when its true nature was always specific and enteroviral. Yet this seems to be forgotten or is getting lost or misinterpreted.

On the one hand there is psychosocial chronic fatigue research, focussing on proving psychiatric therapy as treatment, on the other an emerging body of biomedical chronic fatigue syndrome research, but can it claim to be biomedical Myalgic Encephalomyelitis research? This is our question.

Take for example Rituximab. Who will Rituximab actually help?

 Rituximab is being promoted as a potential treatment for ME; but is it really ME research or is it actually biomedical CFS research? And why is it so important to understand and identify the difference?

Given the warnings, for example by the John Richardson Group, that ME patients "should avoid any drugs which suppress their immune/virus balance in favour of the virus," including Rituximab, we ask, how can Rituximab research in ME be appropriate ?

Is it really the much longed for hope, for Myalgic Encephalomyelitis, classically defined as enteroviral, that people are clinging on to? We have concerns.

Given the warnings, for example by the John Richardson Group, that ME patients "should avoid any drugs which suppress their immune/virus balance in favour of the virus," including Rituximab, we ask, how can Rituximab research in ME be appropriate ?

Rituximab is a serious drug, its side effects can lead to death. The makers of Rituximab (Rituxan) themselves state :

People with serious infections should not receive Rituxan. It is not known if Rituxan is safe or effective in children.”

How, though, can people with a diagnosis of CFS or CFS/ ME or ME even, know for certain if they have an active infection? Testing for ME is inadequate and limited, particularly in the UK.

The John Richardson Group is very clear : “There should be but one aim for doctors and that is to understand the causality of M.E. and to instigate the correct treatment.” Ofcourse, but there are no universally agreed identification criteria being used, to safely recognise and adequately clarify who has enteroviral ME as opposed to Chronic Fatigue or other fatiguing conditions. Nor is it clear that everyone means enteroviral ME when they use the name ME.

Once CFS is added to ME confusion is inevitable; a range of different illnesses, manifesting with fatigue, are added to neurological ME, so cleverly incorporated that no one really quite knows if you mean the same thing or whether the diagnosis is accurate enough to identify any specific illness.

“ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range of meaning and poorly identified conditions, even if they are accepted as physical illness.

Poor definition can lead to people being used in research who could have a range of illnesses from, for example, chronic fatigue due to mental health issues, allergy, undiagnosed hypothyroidism, undiagnosed Lyme Disease, POTS, misdiagnosed Coeliac Disease, exhaustion, Giardiasis, undiagnosed fatiguing illness, mitochondrial and other rare disease, EDS, damaged pituitary etc, through to specific Myalgic Encephalomyelitis. All sadly hidden in a vague illness label.

Inevitably a sample of research patients is unlikely, in the UK, it would seem, to purely consist of people with enteroviral ME, because testing is so poor and diagnosis unreliable.

All the time that the label CFS, with its poor identification criteria, is an accepted alternative or deemed equivalent to ME, any research results are bound to be flawed; researchers and patients will not know whether they actually have ME or something else. Even people with an ME diagnosis are unlikely to have definite medical proof.

With fatigue as the primary focus for illness identification, how can any research be effective? The most severely affected do not use this term. They are way beyond fatigue, yet their most severe symptoms for example, paralysis, muscle spasms, seizures, stroke like episodes, acutely incapacitating noise and light sensitivity, cognitive impairment, are not even being used as disease markers.

How, can we be confident that the right illness is being researched, if the full symptoms of ME are ignored and the most severe patients are excluded from physical research?

People with ME face either being involved in research for something they do not have, or being excluded from research altogether. Research using the terms ME/CFS or CFS/ ME are unlikely to be specific enough to have a group of patients with one pure illness.

Enteroviral ME, it seems to us, is now so effectively covered up , even the charities do not adequately represent it. People no longer really know what illness they have and those with the most severe illness manifestation are isolated and unlikely to be recognised or able to participate in research. They are already medically neglected and ignored. The true nature of the illness is then hidden and overlooked.

If you have enteroviral ME, assuming the John Richardson group are correct in their warning about the dangers of suppressing the immune/virus balance, why would you participate in a study of Rituximab? Surely it would be inappropriate and dangerous?

Even if a group of ME/CFS patients was split into subgroups, including a subgroup with Ramsay - defined enteroviral ME, surely they must be excluded from treatment for safety’s sake.

It seems the best possible outcome, would be to separate people who do not have ME, from an ME/CFS group of patients and possibly see if Rituximab can help them, so long as they do not have an active infection.

 But how possible is this in reality ?

Surely to actually give Rituximab to patients with enterovirus would be too dangerous to conceive? To return to our first question: what does ME mean anymore? Less and less it appears to mean enteroviral ME in the UK.

Biomedicine, then, aided and abetted, ironically, by the charities and support groups, is in great danger of completing the process psychiatry began: the burying of ME in CFS.

Even if the research is biomedical.

 References :


The John Richardson Research Group’s THE WAY FORWARD (2013) 


Jodi Bassett (2012) MERUK - Former M.E. research group? http://www.hfme.org/wmerge2.htm




My campaign

I will campaign in my own way, to get rid of the term "CFS", no matter the practical issues. I see it as the most urgent task facing us.

I was part of the Learning Difficulty/Mental Health , People First/Survivors Speak out movement back in the 80's; this coincided with the closure of the large  mental hospitals and asylums;  I witnessed , at first hand, how very meaningful and extraordinarily powerful  it is  for people to take their power back  - and how much names and labels mean.

When I trained as Nurse, my qualification was "Registered Nurse for People who have a Mental Handicap." Today, not that many years later, "mental handicap" is  just so inappropriate, the correct term to use is " Learning Difficulties".

A while ago, those  same human beings were being classed as "Idiots", "Imbeciles" , "Morons" or "Cretin",terms that were  slowly replaced by the much more "enlightened  "Retarded" in the 1960s.

"Spastic" is no longer  an appropriate label for someone who has Cerebal Palsy. Still the "Spastic Society" was going strong until fairly recently and who calls someone with Down Syndrome a "Mongol" anymore ?

 "CFS",  like so many labels before it is  toxic and   dangerous; unspeakable  abuse is being inflicted upon people with ME, especially the most severely affected in the name of CFS. 

People with ME  must take their power back !!

What about all those CFS papers that have been published ?? 

Get over it.

What about all those papers on "Mental Handicap" ? What about my own qualification ? What about all that published research on the "feeble minded" ?

You move on; that's all. In the history of human services, that is the way progress happens.  You make a stand for the truth and  move on from a clearer place.

You move on or face decades more of the same mistreatment.

Homebound Music

Coming very soon : I am currently building the webpage, music by those who have to stay at home.

The gap between ME and CFS is now at breaking point !!

Read in the new edition of ME Global Chronicle about how parents are being accused of abuse, read about the new "Karina" case in Denmark, read about Joanne's incredibly serious , horrific "treatment" in Germany, read one woman's account of starving to death, with no medical care and contrast their stories with the cutting-edge clinical research published elsewhere in the magazine, the biomarkers, all the indicators of severe physical dysfunction and ask yourself how have things come to this ?

Why has AfME, for example, over many years giving psychiatry such a prominent voice, instead of sending it and its fanatical death-makers packing ? Witness their upcoming symposium on "Severe ME" for example.

What our national ME Organizations have been getting up to for the last two decades, making themselves rich, bears little or no relationship to the struggle ME patients, especially the most Severely Affected face. How have things got to this ?

We know the answers !! Powerful vested interests, take-over front companies etc. etc.

The fact is we are left with NO EFFECTIVE international voice representing ME.

The investment is in CFS.


To read ME Global Chronicle is to know that the issues facing people with ME have never been more serious or more deadly.


http://let-me.be/download.php?list.1

House and bedbound does not describe Severe ME.


Greg & Linda Crowhurst
August 2014

(Published in : The ME Global Chronicle #6 August 2014

When you look with honest eyes and open heart at the plight of people with Severe ME; the ones who represent most fully what ME is, with their tormented bodies, widespread cognitive dysfunction, crushing muscle dysfunction, untreatable multi-layered pain, shaking spasms, transient paralysis, acute noise sensitivity, light sensitivity, touch, motion and chemical sensitivity, complex gut issues and difficulties swallowing and eating, the pretense that the disease is manageable and treatable psychologically is shocking.

The medical neglect and the isolation of the most ill is a tragedy and a travesty. People with Severe M.E. are not being investigated adequately, not being properly medically treated, not being represented accurately or portrayed fairly.

In order to survive, cope with the profound challenges that living in an increasingly hostile environment creates, patients become more and more isolated from the world, invisible even, left to suffer for decades on end without proper treatment or tests.

The term “house and bed bound” is often used in context of Severe ME, as if that describes severity. “House and bed bound” is a blanket term that:

does not identify what is going on medically at a physiological level in Severe ME.
does not describe the severity of symptoms each person experiences individually and differently.
does not convey the complex multi- system dysfunction people experience.

Neither does “house and bed bound" convey:

the endemic medical neglect
the government responses that, against all the evidence, buy into psychological treatment pathways;
the charities, practitioners, medical establishment, who willingly collude with psychiatry;
the inadequate, inaccurate portrayal and focus on fatigue;
the poor identification criteria;
the lack of medical identity;
the disinterest of neurology;
the misunderstanding of M.E. deliberately compromised through immersion in a sea of loosely defined and under-investigated conditions;
the complete lack of biomedical input and proper medical investigation that people with ME experience, time and again.

Nor does the label stop psychiatry from callously perpetuating the misinterpretation and misrepresentation of ME as a mental health condition.

People who live with Severe ME, sooner or later come to know personally, those who die, directly or indirectly, as a result of this medical neglect. Their numbers, sadly, mount up over the years.

What inspires us about those wonderful people, sadly no longer with us, was their determination to be themselves, despite everything.

What angers us is how badly they were let down by society, government and the medical establishment: the wasted lives, lost too soon.

What grieves us is the unmet global need for much, much better treatment and acknowledgment of the full reality of this devastating physical illness,the need for much better medical support and understanding, for responsive services that actually reflect understanding of the house and bed bound reality.

There is little real hope of adequate or honest provision, all the time the psychiatric lobby entrenches itself further and further into mainstream ideology, misdirecting funding and research, leaving people unsafe, without adequate recognition and little or no power to get things changed.

When you are very severely affected you live on the edge and the others live there with you. You do not know who might be next to die. You do not know if it will be you.

You just keep going and keep going, one moment at a time, hoping to improve for no real reason, for little or nothing is being done.

There are no cohesive, reliable, complete explanations, the medical profession as a whole does not want to know. You hope you will not be harmed; much as you try to avoid mistreatment, inevitably it still finds you.

The longer you live with Severe ME or live with someone who has Severe ME, their health deteriorating into unfathomable levels of suffering, too vast to describe, the more clearly you see the truth.

 You see very clearly that :
People are being medically ignored and fobbed off by the medical establishment.
Current research does not generally involve people with complex hypersensitivities, too difficult to deal with, excludes the most severely affected, the ones with the full range of symptom experience.
Medical professionals do not have the first clue how to deal with those who are profoundly noise, light, chemical, touch, movement sensitive and paralysed; they do not know how to communicate safely with people who are harmed if approached or touched wrongly or spoken to loudly or in the wrong way.
Psychiatry is rapidly increasing in power and expanding its influence.

On Severe ME Understanding and Remembrance Day, August 8th, Severe ME sufferers, desperate to be “seen, heard and recognised” mounted an “ME Cover-Up” Campaign to highlight the whole-scale neglect of M.E. Enormously ill people, at great effort, took and sent in photographs of themselves covered up with a sheet. Some of the slogans they held up were heartbreaking : “Out of sight, out of mind”, “Severe ME, invisible, ignored”, “21 years of agony and no Consultant”, “Living behind the lies”, “Twenty years sick, stop the cover up!”.

Their powerful images can be viewed here : http://stonebird.co.uk/archive/aug8/

Perhaps the most moving picture was the one a fourteen year, old sent-in, wrapped in a sheet. What is the future for the children, we have to ask?

Exceptionally bleak, if things do not change.



Action for ME Symposium on Severe ME : alarm bells !

I have just been informed that Action for ME are hosting a symposium on Severe ME, : Friday 14  November.

Immediately alarm bells clanged left, right and centre : I was right !!

Two of the speakers have published an article (http://bmjopen.bmj.com/content/4/6/e005083.full) , citing references to "recovery" from "Severe ME" through CBT, GET and PACING.

This is outrageous !!

There is no recovery possible in Severe ME, without investigating and treating the underlying pathology .

Severe ME is the last bastion, in the psyche's increasingly frantic and outrageous attempts, over decades, to bury the disease under CFS.

How much longer are we going to tolerate the blatant misrepresentation of ME, by the very ones who are supposed to be representing our interests ?

What is the word beyond unbearable?

I float around

In a sea of impossibility
Punctuated and defined by pain and paralysis.
The world floats by without me.
People live in the world.
I, however, live life below the starting point for access.
There is no word for this space.
I call it 'below Maslo'.
Where hopes and dreams are just that.
They never come to fruition.
They are shrouded in impossibility.
Every lost moment takes me further from the world.
Every holiday missed, every visit denied, every activity put on hold,
Every hope of interaction, feeling, connection, stunted and then ripped away
By torment and torturing symptoms:
The environment a play space for the able
Has become a hostile, dangerous, impossible place for me.
Very Severe ME: so much more than disability,
So much more than most illness experience,
Abstract in its unexpected, unpredictable, catastrophic and deteriorative nature.
A living nightmare for the most afflicted
Never able to feel well in any moment
Anywhere within or without you.
Always in indescribable agony.
Every level of function and communication and expression
Is damaged in some indefinable yet utterly complete way.
The indescribable becomes the normal
Thus the isolation becomes complete.
There are no words
To describe the total, tortuous experience of the environment,
So much more than even the severely affected already know.
What is the word beyond torture?
What is the word beyond torment?
What is the word beyond unbearable?
What is the word beyond indescribable?
And who in the ordinary world, going about their daily busy lives,
finds us more than an inconvenience and a disappointment?
Who can ever understand the broken places I exist in
Harmed by people, harmed by virtually everything.
Who really gives a fig?
They would have to give up too much
To try and really understand.


The shocking truth

This is what we mean when we say Myalgic Encephalomyelitis :
 it is time to state the shocking truth.

The role of the facilitator

Stonebird

THE ROLE OF THE FACILITATOR

When someone cares for someone with Severe ME/ Very Severe ME they take on the role of facilitator. They are the hands and feet of the person. 

They do things for the person that the person wants doing. In ME the issues are extremely complicated in how to help without causing deterioration and aggravating symptoms, impacting heath.

This is what being a facilitator is all about:

Facts about ME: know all you can about the physical reality of Severe ME - Know them.

Aware of the harm you can inadvertently do - Be alert to this.

Care about every single thing you do - Make sure you get it right for the person.

Immediate - Respond straight away.

Loving - Do everything in a compassionate and loving way.

Ignore your own personal feelings and opinions - You are representing the person.

Take into account all hypersensitivities and post- exertional impact - Everything matters.

Avoid mistakes - You cannot afford to make any when health is at stake.

Think all the time about what and how you are doing everything - ensure it is appropriate.

Ordinary things done in unaware ways can still be harmful - Be exceptionally careful.

Remember that you are there to do what the person has asked - Only do what you are asked, nothing more, nothing less as harm can happen if you forget this.

Stonebird
August 2014

This is Aug 8 : Severe ME Understanding & Remembrance Day


,

When I feel I have no strength left,
then I will remember and know,
that You are my strength.
When I feel like I have no one to lean on,
then I will remember and know,
that I can lean on You.
When I feel overwhelmed by
the dark realities of ME,
then I will remember and know,
that I can seek refuge under Your wings.
There I shall wait,
because I remember and know,
that Your light will still shine on me.

With thanks for beautiful words by Nini