Search This Blog

Stonebird Autumn Art Exhibition 2011

Stonebird announces the launch of its online 2011 Autumn Art Exhibition , featuring works by  the  author of " Missing: A life broken by Multiple Chemical Sensitivity" Eva CaballĂ© and Greg and Linda Crowhurst, in order to raise awareness of the atrocious hidden suffering of Severe ME and Multiple Chemical Sensitivity : 

The work will be on display at the  ME and Fibromyalgia International Conference in Ireland on Oct 9th , hosted by the Academy of Nutritional Medicine (AONM)  and the Midlands Fibromyalgia Group; please see : 

for more details.

How do you help someone with Severe ME ?

Stonebird :
How do you help someone with Severe ME ?

Linda and Greg Crowhurst 13th Sept 2011

First and foremost you have to remember that the person with Severe  ME does not react to the environment in the same way that you, a person without ME, does.

The environment is hostile and assaulting, normal things that you would not even notice or would enjoy are too much, for the person with Severe ME :

Noise hurts.
Light hurts.
Movement hurts.
Food hurts.
Music hurts.
Chemicals hurt.
Cleaning products hurt.
Perfumes hurt.
Contact hurts.
Questions hurt.
Information hurts.
Movement hurts.
Relaxation hurts.
Rest hurts.
Exercise hurts.
Computer screens hurt.
TV hurts.
Talking hurts.
Radio hurts.
Interaction hurts.
Demands hurt.
External expectation hurts.
Clothes hurt.
Touch hurts.
Trying to help, hurts.

Everything you do can hurt and make that person hurt, can make the person more ill, can deteriorate their physical health.

However dreadful their life is, you have to remember you can make it worse without intention.

The best thing a person with Severe ME can hope for is that you :

Accept that the person is extremely physically ill.

Know that they will not react normally to any stimulus.

Know that they may not be able to communicate their needs and wishes at any one time, or at all.

Know that their reactions are because of illness, not necessarily how they feel about you.

Understand the affect you have on them, because they are physically ill and extremely hypersensitive, in multiple ways.

Minimise the impact you have by respecting what the person with Severe ME tells you and by relating it to your own actions i.e. if they say “Don’t wear perfume”, it is because of multiple chemical sensitivity. So please do not wear perfume.

Do not minimise the importance of what they tell you or think they are being difficult. Realise how significant things are.

Even if things seem bizarre and extreme to you, do what is asked of you out of respect. You can make a person dreadfully ill otherwise.

Understand what is physically wrong in the person;  in Severe ME there is  complex multiple system dysfunction. You need to be clear that ME is a World Health Organization Neurological Disease, not a “fatigue” state, it is not about just being “tired” and exercise will not make it better.

Do not buy them gifts that make you feel like you are a good person, but which are irrelevant or in denial of the person’s reality i.e. do not buy toiletries and perfumes, for a person with multiple chemical sensitivity. Do not buy sweets , pastries, cakes, for the person who has food allergies; unless you know it will not harm them.

Do not give them a writing set, if they cannot hold a pen.

Be aware of any sensitivities, allergies the person may have and really try to think what the person needs or likes, that wil not harm them.

Be aware of the way noise sensitivity impacts upon a person with Severe ME and do not do things that will exacerbate it. It may be worse at different times of day. Understand when is the best time to try and make contact, if that contact involves noise i.e. telephone.

Do not turn up unannounced if they have told you not to. Be flexible in your arrangements with the person with Severe ME. Do not blame them or think they do not  care,  if they cannot keep and an appointment.

Communicate with them in the way they can manage; overstimulation can lead to worsening symptoms.

Do not disregard the physical limits placed upon a person with Severe ME :

·        If they say they can only talk for a minute, do not go beyond that limit, no matter how frustrating that might be.

·        If they say “do not ask a direct question”, find another way to find the information you want, because the cognitive dysfunction is complex and very real. A question could shut the person’s head down completely.

·        If they say they can only cope with one person in the room, do not bring several people with you to visit.

·        Be open and flexible.

·        If they say they cannot physically do something, do not disbelieve them.

Do not assume that the medical world knows best. The current medical system is compromised by psychiatric untruth.

Any medical opinion needs to be based upon the biomedical truth that ME is a neurological disease.

Do not assume that because you want to help, that you can help.

Ask yourself what can you offer, how can you help, not hinder or make worse ? Any interaction needs to be based on respect, honour and acceptance.

You need to :

Respect the person
Honour the illness
Accept the physical reality

and combat all untruth.

You need to know that there are no straightforward paths to help a person with Severe ME, no matter how much you want there to be.

You need to know that most things will not help;  many may cause additional suffering. You need to know that even if you do all you can to help the person, they may still not be able to access and take advantage of what you offer.

The gap between their life and your life is vast and wide and maybe unbreachable.  Isolation may be the only way a person can cope with the torments of their illness and the assaults of the physical environment.

Help them to live their life in their way and aim not to hurt them by ignorance, neglect, rejection, denial, carelessness, condescension, unawareness or over-enthusiasm and good intentions .

Most damage is done to the person with Severe ME by others :

Not listening to them.
Not hearing them.
Not seeing them.
Not accepting them.
Not understanding them.
Not knowing them.
Not thinking .
Not respecting.
Not getting it right.
Not validating.
Not valuing.
Not empathizing

 by  :

ignoring them
denying them
abusing them
neglecting them
forgetting them
being careless
being arrogant
imposing your will
interpreting wrongly
by thinking that you know better.

If you aim to be aware, hopefully you will avoid these pitfalls.

You need to be very careful to make sure that you do not wrongly interpret the reality of the person with Severe ME and end up blaming them, either overtly or covertly, for the situation they are in.

Do not give up hope, do not abandon them, listen and wait and love them still realising that they are horrendously physically ill; there is a great physical  need for healing but the answers are not necessarily there, no matter how much you want them to be.

The Matrix of Truth

Stonebird : Speak Your Truth
Greg Crowhurst 9th September 2011

Under an intimate, dim, glow, last night,  because she is too light-sensitive for bright lights, a world-class biomedical Consultant, two Doctors and a Perrin Practitioner , crammed themselves into our long, narrow kitchen , finding themselves  a  chair, if they were lucky, a stool,  or just somewhere to lean, while my wife listened , through a half-closed door and layers of agony, in the adjoining, darkened living room.

 The discussion was electric, alive with ideas and suggestions of possible  ways forward, referrals that will be made,   for a woman too severely affected to be even touched .

All that happened -  is happening - because 17 years ago, my wife spoke the  truth that  she is ill. At first I struggled to believe her, but eventually I heard.

 Then we fought , painful is not the word,  against the  mountain of  heartbreaking prejudice, that surrounds ME,  for many years to find a good GP- and he heard. So began  the  long lonely struggle to get to the top, to speak one-to-one, over a coffee,  to those who run our local Primary Care Trust   , eventually  they too heard.

We make good use of  the Formal Complaint process ;  we never, ever give up. 

Two words ,   make all the difference in the world  :

"No more !"

Sick of being abused by the clueless, cruel  psychiatrists ?

"No more !"

Sick of your local  NHS not providing any biomedical ME service ?

"No more !"

Sick of the lies and nonsense that are spoken about ME ?

"No more !"

If you dare to speak out , if you dare to challenge being left ,suffering  endlessly without a biomedical  ME service, if you dare to complain about inappropriate and misguided treatment, if you dare not to compromise one iota over the absolute need for proper ME biomedical tests and treatments , eventually you will be heard.

Then others will hear , and they will tell others and so the word will spread and eventually good , positive, things will happen for you : we call it building  The Matrix of Truth.

Last night ; that was  its awesome , unstoppable power.


Letter to my MP re the Health Reform Bill

MPs are debating the Health Reform Bill. If you possibly can, PLEASE contact your MP and urge them not to support it .

Here is my letter :


As you may remember,  I care full time for my wife who has Very Severe ME; we are  very worried  about the possible implications of the  Health Reform Bill, which , in our opinion, is focused upon choice limitation, demand reduction and profit generation, rather than patient need, especially the needs of the most frail, disabled and vulnerable,  and are writing to ask you to oppose it.

The reforms ,which appear to be based upon  a privatised ,US “managed care” system,  will result, in our opinion,  in the tragic  situation where  those who pay or are insured will get a better service than those who do not.

We are particularly concerned that  GPs will  be given the power to choose which services they provide in local areas , this means that a person with ME , if they receive a service at all, might not be able to get access to the same services as someone who lives down the road from them , purely because they  live within a different commissioning group.

We are also very worried that if this Bill goes ahead,  how  in  a few years years from now independent GPs may have been driven out of the health  system and into insolvency  by American-style  Health Maintenance Organizations (HMOs), especially given how  some of those key players might include :

• UnitedHealth, a health insurance company and health maintenance  organisation (HMO) already involved in NHS commissioning, which has settled an accusation of major fraud out of court against the US Medicare scheme which funds health coverage for elderly US citizens;
• Hospital Corporation of America, which admitted its guilt in a case of Medicare fraud, leading to the then largest ever fraud settlement in US history;
• General Healthcare Group (GHG), a subsidiary of the South African corporation Netcare, which pleaded guilty to illegal organ transplants;
• Care UK, owned by private equity firm Sovereign Capital; just before the last election, the wife of one of the owners of this firm allegedly contributed £21,000 to Andrew Lansley’s private office, according to the Daily Telegraph .
(Source : Liberating the NHS: source and destination of the Lansley reform . Dr Lucy Reynoldsa, Dr John Listerb, Dr Alex Scott-Samuelc & Professor Martin McKeea 29 August 2011

My wife has already suffered for decades under the influence of the giant US Healthcare provider Unum Provident , which has seemingly gone out of its way to propagate the myth that ME is not a physical disease. The last thing we want to see happen is even more power being given to these vast multinationals.

We are very  concerned how another key player , the  Conservative think-tank Reform has according to the BMJ,  been funded by at least three of the prospective entrants to the new English healthcare regime (GHG, and  management consultants KPMG and McKinsey who are involved in NHS commissioning) .

We fail to understand why these Health  Reforms are necessary at all; the existing NHS is widely considered to be one of the  least costly healthcare systems, in the world, with one of the best levels of access to care.

 We have little confidence in this   Government and  the way in which it  has gone about amending  the Bill  in such a piecemeal fashion. We are very worried indeed about  the repeal of the government's duty to provide a comprehensive system of healthcare;  about allowing private companies to challenge GP consortia ;  about  allowing the National Commissioning Board to distribute funds with no regard to equality; about the  fact that  Monitor's future role in promoting competition has barely been touched.

We urge you to take note of  the British Medical Association’s , call last week,  for this  legislation to be withdrawn or substantially changed , they highlight :

  • Inappropriate and misguided reliance on market forces
  • Unintended, knock-on impacts with longer-term consequences such as the impact on public health and medical education and training
  • Over complexity and bureaucracy following recent changes to the Bill

Please also take note of yesterday’s UNITE poll, which shows that 90% do not trust David Cameron on the NHS and 70% believe, as we do, that this Bill will lead to privatisation.
A vote for The Health reform Bill in  its current form surely means the death of the NHS; this is too outrageous to contemplate.  We urge you, with all our heart,  not to support it.

The Line

There seems to be a line 
that most people will not cross
friends, neighbours, family, health professionals even,
government officials.
They accept I am ill
to a degree
but simply do not want to know
or understand
how ill I really am
or how they affect me
nor how they can relate to me
in an honest way,
the horror
of my existence
seems beyond
the personal capability
of most people.
They simply do not want
to see, hear, feel
my horror and torment
so they pretend it
does not exist
and ultimately
that I
don't exist either. 

Linda Crowhurst 5th September 2011