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All the hooey

Lying in bed, late last night, Linda sobbing in too much pain, in far too many parts of her body  to cope with, I reflected upon that MEA Survey, with my blood boiling.

This is  serious suffering going on here, and there is only me and my arms and my not knowing what to say after 17 years of relentless and deteriorating hell. And now   the MEA have put  out a   document,   entitled   "Managing my ME" - a title that immediately made my toes cringe,  a document  which eases itself down, with a contented sigh, so smoothly, so comfortably into the NICE / Psychiatric paradigm, give or take one or two tweaks, don't you know.

You have to wonder, does anyone else inhabit the world of ME that I do ? Inhabitants of ME-land don't mention the "M" word at all, they are far too busy on their lonely quest, turning over rocks in the baking, blinding   heat, trying to unearth some, any kind , of a test or a treatment; anything,  that might help. God knows.

They are far too tired , their backs are whipped,  are  aching,   from writing and writing and writing and meeting and meeting and meeting , with their local Health Authorities. Dealing and dealing and dealing, over and over again,  with all the  hooey;   the kind of hooey, at least that's my opinion,  that the MEA have just put out.

The hardest thing to deal with here in ME-land ? This pretense of doing something for you- be it advocacy, service delivery,  needs assessment, leadership, when in fact your AFME's your MEA's , your PCT's are offering you zero, zilch, zip, zippo, zot...nothing ! 

Nothing because it's not relevant to us in  ME-land, it's not relevant to this disease that I am having to deal,as a carer,  with every second of every year, year on end. It's certainly nothing to do with the price of fish, however it's a lot to do with maintaining  the status quo. 

I can barely bare to sit and type this without recourse to profanities :  the STATUS QUO !!!  The demented, twisted, inhuman, manipulating, hopelessly corrupted, evil that has left my Linda crying in bed last night, suffering without hope of a cure or treatment for 17 long years and has driven me deep into the gut-churning, screamingly awful, maddening desert I find myself stranded  and sinking in.

How the hell am I going to get Linda and myself out of here ? 

It's open and shut . The only way out is through money, power and influence. None of which I have. So, okay, I've written the next Harry Potter (I have - and it's out  with prospective publishers now)... it's back to the wall here and I'm doing what I can; but hey I'm beginning to run out of ideas here.....

The ones who DO  have the money, the power, the influence, the AfME's , the MEA's ; can you possibly imagine a world where they were representing people with ME ?

Me neither .

A Response to the ME Association Survey “Managing my ME : What people with ME/CFS and their carers want”

Stonebird : the Lived Experience of Severe ME

A Response to the ME Association Survey  “Managing my ME : What people with ME/CFS and their carers want”

Greg & Linda Crowhurst
28th May 2010 : Permission to Repost

This survey is hugely disappointing,  because it still perpetuates the myth that management is all that people with ME need; if only it was done better.

The Survey just does not ask the correct  questions : 

1. “ do you want a Biomedical service ?”; 
2. “do you want specific  Biomedical ME tests not currently available ” ?;
3. “and do you want real Biomedical treatments,rather than therapy, charading as treatment “?


The Survey does not adequately  reflect  that there  is an alternative path to the current psychosocial management approach; the biomedical path. This is even reflected in the unfortunate tile of the survey, which is already validating a “management “approach, right from the beginning.

 There are no apparent new options or innovative questions in this survey. 

Where was the question asking if people want better ME biomedical testing , currently not available on the NHS ? 

Where was the question that raised the point that there might be biomedical treatments available  , if only the NHS would provide them  ?

We know there are mitochondrial and pesticide tests. Why weren't they included as a possibility for people to say they want ? Where was the question “do you want proper brain scans, such as PECT and SPECT, which would show brain dysfunction ?”

Did the survey   ask people what definition  they want to identify their disease ?

 Did it raise awareness that the Canadian Definition  should be an option as opposed to the vague,  Oxford and Fukuda criteria ?:

Although the questionnaire asked who diagnosed you, it didn't ask whether the Doctor believed it was a physical illness. This is key to finding out who has ME and who has Chronic Fatigue. This is vital information which would highlight who specifically is answering the questionnaire and would verify its validity as truly representing people with ME.

Did it  address the needs of the severely and very severely affected ? Not in our opinion.

The survey concluded that the Severely Affected found it difficult to impossible to complete it ,  even though it could have been done in stages.  So how are the severely affected supposed to make their needs known ?

 There were no questions specifically geared to the severely affected, despite the fact that the current management regimes are failing them badly.

Most of these questions would not be relevant to the most severely affected, who cannot get to clinics, cannot participate in group sessions, cannot even undergo a pacing regime, because they do not have enough functional ability and are desperate for medical treatment, not management.

When it came to symptoms, the survey did not  raise any of the more serious   symptoms that are characteristic of severe / very severe ME, which again indicates that it was not geared towards the severely affected

How can it be that those who are most ill, most neglected, most dismissed and least helped , with such dire and severe , sometimes life-threatening  and deteriorating symptoms, were not adequately enabled o have a voice  through this questionnaire  ?

This survey claims to be a definitive document about the needs of people with ME. Yet the  more extreme experience of ME is not represented  enough in the questions, we feel. 

The most important result of  the questionnaire , we feel,  is that CBT and GET are not effective or wanted.  This confirms every other previous survey.

Our main concern is that the survey accepts the management approach, with no emphasis in the questions upon a fundamental change in ossible service provision and attitude.

There is no question that asks whether  people are happy to be treated with rehabilitation techniques without any proper ME -specific tests and  treatments , for  the underlying causes of their illness; which is the current NHS position.

It is  a travesty, we feel,  to call this  Survey “Managing my ME;  it sounds more like managing to ignore new possibilities. 

It is time for a change to the management approach.

Management is rehabilitation ,  which is bizarre given that  the underlying illness continues to go ignored, untreated and avoided.

The title implies agreement with the management approach, yet rehabilitation in general, comes after an illness has been treated – just not in the case of  ME. There is no way of knowing whether somebody has recovered enough to engage in rehabilitation techniques, so how can a management approach be the correct focus ?

This is a shame because it could have been an opportunity to really challenge the current lack of proper biomedical service provision for people with neurological ME.

The survey  failed to really raise  the issue of the need  for proper diagnostic criteria,  which would clearly separate once and for all people with ME from people from Fatigue . 

It could have been an opportunity to look with fresh eyes upon the whole  of ME service provision and ask people to comment on the lack of a biomedical approach in the UK. It's an opportunity disappointingly missed.

“Managing my ME” does not begin to address the real need, which is a biomedical service for all.

My MP to ask about the Governments's policy on ME

My  (Tory) MP has just sent me this :

"Thank you for your email and I am extremely sorry to hear about your wife's position.  I will of course do all I can to help you.

In the first instance I am writing to the new Health Minister to establish our policy on ME.

I would also be pleased to meet you at one of my surgeries to discuss our next course of action. "


..if only everyone would write to their MP and emphasise the need for a biomedical approach !

From a letter to Nick Clegg

I wrote to Nick Clegg, Deputy Prime Minister ,  yesterday. Here is an extract :

"Before the Election you set out the excellent  Liberal Democrat position on
ME :

"The Liberal Democrats have long argued that
funding and research must be focused on the `bio-medical' factors
involved and not just simply managing the `psychological' issues.

Whilst I welcome the fact that NICE conducted an investigation into
ME/CFS, I do understand and empathise with the concerns raised about the
findings. The recommendation that patients with ME/CFS be treated using
an `Activity Management Programme' made up of Cognitive Behavioural
Therapy and Graded Exercise Therapy does not follow the World Health
Organisation guidelines which categorise ME as a neurological condition.
In failing to recognise the bio-medical problems of ME sufferers, the
NICE guidelines also fail to recognise the needs of ME sufferers.

To help address the unique challenges posed by a complex and poorly
defined condition like ME, the Liberal Democrats believe in the
establishment of an independent scientific committee to oversee all
aspects of ME research. We would also like to see the government and the
Medical Research Council work with ME sufferers and biomedical
researchers in order to achieve a proper understanding of the condition,
challenge unjust perceptions and consider the issue of research funding.

Whilst we welcome the establishing of local centres to focus on ME, we
feel the NHS is still too centralised and too unresponsive to the needs
of patients and families. We believe the special needs of those
suffering conditions like ME can be better addressed by empowering
patients and making the NHS more accountable at local level."

(Co-Cure 4th/5th May 2010
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1005a&L=co-cure&T=0&F=&S=&X=1F062326E4FF3E02A8&Y=gcrowhurst%40gmail.com&P=2804)

For the first time in many years I have a sense of hope.  I am writing
to urge you to use your  position  in Government to help bring about
the  biomedical investigations , tests,  treatments  , consultants and
respect for this disease, that are so desperately needed for ME
sufferers.

As long as ME is shackled to "fatigue" and a mental health
interpretation , without proper or adequate diagnostic criteria and
as long as psychiatrists who view ME as either non-existent or a
mental-health condition  continue to advise key Government groups, ME
research and provision will be seriously undermined by  this as well
as by  the vested interests raised by the Gibson Parliamentary
Inquiry, but never addressed.

Please help us and all ME sufferers.  Please promote the much needed
changes in attitude and practice  required. My wife does not want to
die, as so many have done already,  from ME.

This Election has been all about change. Change cannot come soon
enough for ME sufferers and carers like myself."


Yours sincerely,

Greg Crowhurst

ME: Your Worse Nightmare

ME : Your Worse Nightmare

(for ME Awareness Week 2010)

I want you to think
of the worst illness
you have ever had
Remember how dreadfully ill 
you felt
How everything you normally did
suddenly became totally unmanageable
Perhaps your head hurt so bad
that you had to lay in bed all day to cope
Perhaps you felt or were utterly sick
and food made you feel even worse
Perhaps you were dizzy ,off balance
 and disorientated
so that you had to sit or lie down 
or fall over
Perhaps you had an operation and 
felt  weak, groggy and sore.
You must have felt out of synch with the world
and unable to participate in it
 like you  normally would
Now I want you to add pain
Pain that spreads all over your body
Not just one sort of pain
but pain that throbs , 
pain that burns, pain that itches
and screams at you
pain that crawls up your skin
and invades every millimetre of your body:
Your nose, your eyebrows, 
your eyeballs,your ears, your scalp,
your neck, your front,
your back,your toes,
even the soles of your feet
Everything expanding and 
contracting in agony
Now look inwards 
and you find your stomach hurts, 
your  intestines throb, 
your diaphragm aches, 
your muscles burn
with exquisite pain 
like you have never known before
Now imagine that this
unbearable, intollerable,
never ending pain
that you simply dont know 
how to tolerate
Gets worse everytime you
 sit or lie down
and intensifies even more so that when, 
if ever ,
you actually manage to get to sleep
you waken up in even more 
tormenting pain than  
you were in before 
And this is only the
 beginning of your nightmare.
Now I want you to imagine the world has 
suddenly got incredibly loud and everything
 is irritating to your ears. 
 Noise sends piercing pain into your head
and the vibrations echo round your whole body
exacerbating every inch of pain to a crescendo 
A whisper sounds like a shout
Banging in the street turns your head
into a drum
Music which you previously loved
suddenly becomes a torrent of cascading irritation 
Voices on the radio suddenly become 
an assault of indefinable words and sounds
The picture moving on the tv screen becomes
a piercing blur that tears at your eyes 
and pierces your mind
You cannot follow the plot
You cannot understand what is going on.
Incoming information jams in your head
You are left in a bewildering fuddle 
Your thoughts disappear and your mind
 becomes an empty blank
The phone rings and you put your head 
in a cushion to stop the noise
And now you begin to realize that
 you are being tortured by normality
Think what it is like to discover 
that people make you feel very ill.
Their very presence, their noise, 
their movements,their conversation,
their perfume,
even their touch, makes you feel
worse and worse and worse
so that you cannot  bear to see people, 
you cannot talk to them, 
you cannot answer their questions
You cannot even speak on the phone 
to them or hold a pen to write a letter.
Think what it is like to then discover 
that on top of all this 
you are light sensitive.
Even dim light hurts your eyes.
Suddenly you have to live in  darkened room, 
wear sun glasses in winter 
Cover your head with a cloth 
 to avoid over stimulation
and to your dismay you find that your muscles 
have mysteriously ceased to function
Your hands wont hold anything
Your legs wont work
Sometimes your eyes wont open and you cannot speak
You cannot eat without help
You have not got the energy to chew your food
Swallowing has become difficult 
and dangerous as food gets stuck
You have become strangely sensitive 
to most foods and only a 
strict diet is possible
and very very dull..
Working has become totally impossible
You cannot do the basic things 
you need to do to get through the day
You cannot get to the toilet unaided
You cannot cook your food
You cannot wash and iron your 
clothes or clean the house or 
use the hoover
or mow your lawn or answer 
the door or post a letter.
All the things you take for 
granted simply disappear from reach.
You cannot even walk.
And your worse nightmare 
 has come true too
Every time you sleep - and you find 
this is sometimes two or three times a day-
you wake up completely and absolutely  totally
Paralyzed.
Conscious
Yet unable to speak or call for help
You have to lie and wait in a 
numb body that cannot move,
Tormented by intense pain and 
extreme pins and needles
you wait till finally help comes
But even then you cannot bear
 to be touched or moved.
You are helpless to the 
power of this paralysis
till it releases you slowly
 from its clutches.
Imagine all this happening to you
not once or twice or even for a few days, 
but continuously
day after day
night after night
week after week.
month after month
year after year
decade after decade
Imagine this surreal
 life suddenly
  becoming your whole life
without relent
Then discover that
this is not like any other illness
where you are treated with respect
provided with a knowledgeable consultant
Given proper biomedical tests
and offered treatments
 based on the results.
And your GP actually 
believes you are physically  ill
Not so in this illness.
Nothing is given. 
Nothing is as it should be.
Everything is different.
Now you find that you are on your own.
Most people and especially 
professional people,
but also your friends and family
who should love and care for you
Simply don't believe you.
Cannot understand you.
Give up trying
Blame you for being ill
Get angry and persecute 
or reject you
Simply fade away.
This is now your ongoing reality.
Severe illness.
Complete Isolation.
Neglect.
Poverty.
Torment.
Denial.
No biomedical  treatment.
No proper testing.
Difficulty getting aids
and equipment to help.
Difficulty accessing services 
and benefits you are entitled to.
Difficulty communicating your needs.
Living on the edge of society.
Abandoned by people.
No hope and little understanding.
The future  is dim..
Think how this feels.
Remember what I have said.
Then do something about it,
Change my reality.
Speak up for ME.
Reach out to those in need.
Understand their illness.
Understand the
true horror of their experience.
Stand in solidarity with them.
Make things change for the better.
and make it  happen today.
Speak up for ME.
Invest in ME.
Remember ME.

Linda Crowhurst 11th May 2010

A Manifesto for the ME Party

On the eve of the UK Election :
A  Manifesto for the ME Party .

Greg Crowhurst 5th May 2010
 (Permission to repost)


Dear ME Patients and Carers,


Our circumstances are largely driven by the eroding of facts about ME
through the clever use of language and the compromising of truth;
miles away from any hope of proper research, treatment and a cure.

Why do you  have to endure condescension and dismissal by neurologists
, doctors, nurses , social workers, not interested in your
neurological symptoms?

Why do you have to endure inappropriate therapeutic techniques, for
your serious physical disease,  as "treatments"?

Why do you  have to endure the denial of the WHO categorising of
your neurological disease in the NICE guidelines and the promotion of
a biopsychosocial approach to your  disease, when it is not a mental
health illness?

Why do you  have to endure a complete lack of biomedical ME clinics
and this  dearth of biomedical ME clinicians ?

Why do you have to endure  no government backing for physical ME research?

Why do you have to endure  lobbyists and psychiatrists  who have
vested interests in insurance companies being allowed to be advisors
to the DWP regarding guidance in your  illness?

Why do you have to endure  psychiatrists being  allowed to
inaccurately define  your disease with too few symptoms and promote a
vague symptom of fatigue that is not the primary dysfunction in ME?

 Why do you have to endure  the psychiatric lobby getting  away with
changing the name of the disease from ME  to CFS to ensure this wrong
focus?

Why do you have to endure  the neurological nature of this illness
being  dismissed and the  people who have serious neurological
symptoms being  denied a proper service because of that?

Why do you have to endure  inappropriate therapeutic techniques being
promoted by NICE when they are not wanted by people with ME as they
make them more ill and disabled potentially ?

Why do you have to endure  the vast array of unending ME symptoms ,
the fact that there are no drugs to alleviate them  because the
Government has wasted millions of pounds upon pointless  psychiatric
research ?

Why do you have to endure  the  isolation caused by people , both
medical, official and in society including families, who do not
understand this ME is a serious and severely disabling physical
illness ?

Why do you have to endure  living  in fear that you will not  get your
benefits ?

Why do you have to endure  having to accept you will get wrong
treatment or poor treatment or no treatment for your ME ?

Why do you have to endure  knowing that you are physically ill but
here is no appropriate treatment for you and there is not going to be
unless the untruths  pedalled by the psychiatric  lobby are  drowned
out and shown to be false ?

Why do you have to endure  knowing that there are few clinicians if
any who can actually help you ?

Why do you have to endure  knowing  that you have not had proper
biomedical ME tests and that you are not going to get them even though
there are tests that could be done ?

Why do you have to endure  the psychiatric lobby downplaying this
serious neurological illness , saying it is a mental health issue and
that no research or tests are necessary ?

Why do you have to endure  knowing that you need a proper diagnosis
and medical assessment  but if your GP or clinician or benefit agency
doctor is psychiatrically oriented you are simply not likely to get
the right help and support that you need ?

Why do you have to endure  knowing that as your neurological symptoms
worsen that there are no neurologists who are willing or interested to
help you ?

Why do you have to endure  knowing that going to hospital for tests is
most likely a waste of time and energy and will lead to disappointment
because they will  not do the right ME  tests ?

Why do you have to endure  knowing that if you need drugs for some
other condition they may well react badly because of your ME so you do
not know if you dare take them , yet there is no Consultant to advise
you or your GP ?

Why do you have to endure  knowing that the psychiatric promotion of
the biopsychosocial approach is  wrongly influencing doctors and
nurses who may have to treat you one day and will not understand how
very ill you are and will not therefore understand how to treat you
properly ?

The ME Party would immediately begin to unearth the conflicts of
interest of  industry sympathetic groups that perpetuate the needless
suffering of ME patients.(Walker 2008).

The ME Party would immediately cease all negotiations and wasteful
Government  involvement  with the Wessely and associated  Schools of
Psychiatrists ,Therapists and “Quack Busters”. To argue science  with
them is like arguing reality with Alice in Wonderland as she falls
through the looking glass. (Walker 2008)

The ME Party would seek an international agreement to end the
destructive  global practice of “policy “ – based medicine  usurping
“evidence” - based medicine.

The ME Party will not tolerate the ongoing corporate takeover and
denial of ME any longer and will put an immediate end to the corporate
–led health care system that is being introduced rapidly  into the UK,
 against a background of increasing social control and state
repression.

The ME Party will cease all funding to any patient representative
group that has  formed a partnership with those  that deny ME exists.

The ME Party will establish an independent scientific committee to oversee all
aspects of ME research with full backing and make full  funding and
backing for XMRV research a priority. (Clegg 2010)

…..oh and .the immediate  reinstatement of Sarah Myhill, the complete
dismantling of NICE…

Members of the ME Party  are currently occupying the GMC, MRC,  Kings,
Barts, NICE.....(cf Phillips 2010)

All of us, can and must  dream .


References


Clegg N (2010) in Greensmith J (2010) Open letter to Esther Rantzen,
when Independent candidate for Luton South, on behalf of the M.E.
Community Co Cure 4 May 2010.

Phillips T (2010) Battling for the powerless ordinary citizen Eastern
Daily Press, May 1 2010

Walker M (2008) Cultural Dwarfs and  Junk Journalism . Slingshot
Publications, London









Screaming


Screaming

Greg Crowhurst , May 2nd 2010

Days when I could travel to see my widowed mum, days when I could go to a meeting, a conference, chair a meeting, be at a meeting, get on a train, go on a bus; those days .Those days are gone , are behind me now.

Nowadays , each day gets narrower. Decreases in width to the length of a garden bench, if one is lucky , or to a chair arm, where you sit perched , your arm around your loved one. Feeling her muscles tense , like wire, with pain and suffering. This is what I am talking about now.

Now here is what the Health Authority have just sent out, here is their vision , hot of the press, for a "CFS/ME" service :" The main symptom of CFS/ME is a feeling of unusual and excessive tiredness" . You can guess what follows next : " There is now good evidence for management strategies such as activity management, which enable people to control and improve their fatigue levels. This is done by addressing how energy is used and managing other factors which impact upon fatigue. Also it is useful to use strategies to control debilitating symptoms."


As if I and others in the Region have not uttered a word these last five years about the fact that ME is a WHO neurological disease. As if I was not once the Regional Patient Rep Chair , as if I have not written countless letters to the newspapers, my MP and the Health Authority , as if I have not sat down with them and physically shown them videos of my wife's suffering, as if I haven't pleaded with the Chair of the Health Authority and the Chief Medical Director in person , before it is too late, for biomedical tests and treatments for ME, as if I didn't spend so much precious time, over the years, at so-called "Consultation" meetings.

When I see my wife this ill, I know that this is the heavy cost that we have had to pay for my "activisim"

But as if none of that has happened, here, regardless, comes along this "CFS/ME" Service Plan. Same old, same old plan which has been there all along , same old plan that was drawn up in the first place without any patient consultation, same old plan which we have fought against all along and which is now to be rolled out across the entire Region.

Here's the thing : they want us to comment upon it .

Now there comes a time when "consulting" turns to "insulting" and that time is now.
What more can I do, than sit on this bench, on a beautiful sunny day, when we could be doing so much, my wife in tears with pain, than scream inside.?

Screaming is all I have left now..