Pushed to extremes

Pushed to extremes
Greg & Linda Crowhurst 6th January 2011
(Permission to repost)

The caution order issued to  the clinical scientist ,  found guilty of professional misconduct over the Sarah Myhill case, has been predictably greeted by accusations that he  is a victim of "ME extremists."

Any genuine ME sufferer - or carer - would surely be called an "extremist" nowadays;  the disease has been so drowned in a sea of fatigue misrepresentation  that they  have to speak up loudly to get anywhere :

  • It is EXTREMELY  exhausting and demanding wading through all the false information and generalised non- information that is presented as fact about ME.
  •  I have to work EXTREMELY  hard to raise awareness and attention to the truth.
  •  I have to keep fighting EXTREMELY  hard to get the right biomedical service for my wife .
  • I have to see the truth of my wife's EXTREMELY severe Myalgic encephalomyelitis and keep representing that truth till people hear  and see the EXTREME  abuse that has been happening to patients and people with severe ME for decades  now and the EXTREME  negation that has happened at the hands of the psychiatric lobby , of the true physical reality of Severe ME, misrepresented as if  it is as a fatigue syndrome ; which is  utterly inaccurate.

That makes me an ME extremist then   - and proud of it.

People with ME : 

  • have to endure condescension and dismissal by neurologists , doctors, nurses , social workers, not interested in their neurological symptoms.
  • have to endure inappropriate therapeutic techniques being offered ,for their serious physical disease,  as "treatments".
  • have to endure the promotion of a biopsychosocial approach to their disease, when it is not a mental health illness.
  • have to endure a complete lack of biomedical ME clinics and a dearth of biomedical ME clinicians .
  • have to endure no government backing for accurately identified, clearly and adequately defined ,physically focussed,  ME research.
  • have to endure lobbyists and psychiatrists who have vested interests in insurance companies,  being allowed to be advisors to the DWP regarding guidance in their illness.
  • have to endure psychiatrists being allowed to inaccurately define their disease with too few symptoms and promote a vague symptom of fatigue that is not the primary dysfunction in ME.
  • have to endure the psychiatric lobby getting away with changing the name of their disease from" ME" to "CFS" ,to deliberately ensure a wrong focus.
  • have to endure inappropriate therapeutic techniques being promoted by governments, when they are not wanted by people with ME as they make them more ill and disabled .
  • have to endure the vast array of unending ME symptoms and the fact that there are no drugs or appropriate biomedical treatments to alleviate them ,  because the Government has wasted millions of pounds upon pointless psychiatric research .
  • have to endure the isolation caused by people , both medical, official and in society , including  friends and families , who do not understand that ME is a serious and severely disabling physical illness .
  • have to endure living in fear that they will not be awarded or keep their benefits .
  • have to endure knowing that they need a proper diagnosis and medical assessment but if their GP or clinician or benefit agency doctor is psychiatrically oriented , they are simply not likely to get the right help and acknowledgment that they need .

People with ME have been pushed to the extreme edge by neglect, isolation, deliberate ignorance and misrepresentation. When you are pushed  to that extreme you  have to react  by speaking out. 

I am an ME extremist, then,  in the true  sense  that I demand ME to be treated as the unique disease it is and I speak out for people with this  devastating World Health Organisation  neurological disease that damages lives and is still  almost totally neglected by  medicine .

An ME extremist , then, is someone who wants to have the  boundaries of the neurological disease respected, who wants a biomedical service for this biomedical illness and does not want it represented as something it is not , anymore. You have to be extreme, you have to work extremely hard ,  to uncover the truth and get justice.

It is extremely difficult to find a biomedical practitioner.

It is  extremely difficult to find someone who does not use the term "fatigue".

It has to stop.
My wife is  sick of having a disease that is  dangerous to have , because no one understands it and everyone buys into the manipulated  lies , churned out relentlessly by the psychosocial lobby that this is a mental health fatigue disorder. It is not .People who have a mental health fatigue disorder  need to be separated from genuine neurologically ill ME patients  so that everyone can get the service they need. Their needs are different.Why can't  the medical  profession recognise this  , so that we can all safely move on?

So for 2012 let your motto be :  No more neglect. No more compromise. No more CFS for ME.

·         Say No to psychiatric abuse and misinterpretation
·         Say No to ME and CFS being equated as the same thing
·         Say No to the Oxford Definition and Fukuda definition being used  to identify fatigue patients as having ME . They are not suitable to identify ME.
·         Say No to the mislabeling of ME as Opathy, CF, CFS/ME or  even ME/CFS.
·         Say No to the psychosocial   pathway for   ME
·          Say No to generalised  fatigue being described as the primary symptom for ME
·         Say No to misrepresentation
·         Say No to misinterpretation
·         Say No to the  wrong education of practitioners
·         Say No to ignorance
·         Say No to psychiatric domination of a biomedical, neurological, physical disease.
·         Say No to the denial of the symptoms that people with ME have.
·         Say No to not listening to  your client
·         Say No to preset agendas of what to do.
·         Say No to psychosocial misdirection
·         Say No to the twisting of the truth about ME
·         Say No to media bias
·         Say No to the psychiatric myth
·         Say No to the popular cultural myths about ME
·         Say No to compromised ME organisations
·         Say No to compromised media
·         Say No to the power of vested interests to manipulate.
·         Say No to the NICE Guideline
·         Say No to the NHS Chronic fatigue syndrome and myalgic encephalopathy (CFS/ME)  management care pathway
·         Say No to the pretense of working for and with people with ME whilst actually offering a fatigue service.
·         Say No the burying of truth
·         Say No to being off the radar
·         Say No to hypocrisy
·         Say No to not looking for what is physically wrong with people
·         Say No to denial
·         Say No to compromising the truth of ME to get funding, power, or for personal ego or political manipulation.
·         Say No to complicity
·         Say No to not speaking up
·         Say No to mistreatment of ME
·         Say No to biomedical neglect
·         Say No to the lie that are you  are going to get better with no proper  physical biomedical  treatment or input.
·         Say No to the blurring of boundaries between ME and other illnesses.
·         Say No to the bias in medical journals toward fatigue.
·         Say No to the psychiatric  bias in the nursing profession.
·         Say No to the biased peer review systems.
·         Say No to the biased Influence of psychiatry in government organisations such as the MRC.
·         Say No to the continual twisting of the truth by allowing the wrong people to represent  the illness.
·         Say No to the inaccuracy with which ME is portrayed.
·         Say No to the endangerment of health that is happening
·         Say No to people getting away with saying they believe ME is psychiatric.
·         Say No to the misuse of the word ME for people who do not have it.
Demand that :

ME be removed from a sea of fatigue conditions and psychiatric mental health issues

Proper diagnosis and treatment is provided for everyone in the correct category

ME be given the respect of the unique neurological disease it is.

Practitioners stop treating ME the same as any Fatigue illness, it is not a fatigue illness,  it is a serious, potentially life-threatening neurological disease.

The misdiagnosis, mistreatment, generalisations, the fundamental denial of the unique difference that ME is a neurological multi system disease, stops.

Fatigue practitioners are not given any money for ME research.

ME is  only researched using  the correct  ICC criteria.

ME clinics for ME patients only. Fatigue clinics for fatigue patients only.

Fight for justice. Speak the Truth.


  1. We all just have to keep on speaking out and informing people we encounter everywhere and in any way we can (I am often having to inform telephonists at various call centres etc, about M.E as theyve never heard of it?????) . We will win in the end because science will silence the ignorant and expedient.
    well done for your post.
    This illness would make anyone extreme.
    good luck Matthew

  2. This is amazing... So how do we start? I'm so fed up with my GP not taking me and my ME seriously. I do not want to be treated with yet another anti-depressant - I am NOT depressed! I am fed up with any research I do being trivialised and any treatments researched refused as the are not officially treatments for "CFS" - I do NOT have CFS, I have ME. I know there is a difference but when will the medical profession stand up, take note and actually LISTEN to US, the people who live with ME daily?
    Anything you can suggest of how to get heard, PLEASE let me know... I'm for being an extremist all the way! Ceri

    1. Thanks for this Ceri ,it's a long road but you start with taking backing your power.

      You start with a "yes" - that is SO important - "yes" to the physical reality of your illness, "yes" to your integrity, "yes" to your determination to bring about proper biomedical tests, treatments and a cure for people with ME, "yes" to life.

      Then one day you say, you declare, you swear, you shout , you exclaim : "no more ! " ," not for one moment longer am I going to put up with this !

      You fight for justice.

      Here in the UK you can contact organizations like PhOwer www.pohwer.ne - who will allocate you an advocate - this is invaluable .

      You have to be prepared to use the Formal Complaint Process, you have to write to your MP, to the press, to anyone who can help, you have to be prepared to push and push and push. You have to learn who can help and who cannot, you will be let down, time and time again, people with walk away, you will find that you fight at the end of the day, alone.

      That is how we have done it, that is what we have learned; be very wary about trusting anyone. Trust has to be earned.

      It's not easy, it's really , really hard especially when you are so ill - but what is the alternative ?

      If everyone with ME took their power back - the psychiatric lobby would not stand a chance !

      We can fool ourselves that by posting things on the internet we are doing something. The real action the real change is happening right now, out there - most probably completely under the radar.

  3. Thank you Greg, means so much to know there are people out there who are on the same page as me. Each time I go to see my GP he makes me feel like a fraud and it infuriates me how he casually labels my ME as CFS! I wanted to trial a new medication but he shot it down in an instant and gave me Lyrica (first time it hasn't been an antidepressant) tried 1 25mg capsule and made me feel dire. Felt paralysed by the drug and worsened my symptoms. My body is SO sensitive to even low doses of meds that the 25mg's to me was like someone without ME taking 500mg! So here I am again, stuck with my ME getting worse, trying to fight for my rights to get true recognition for this disease. I know how much it effects me and my family daily. I think my GP should come and live with me for a few days just to witness for himself that this has nothing to do with "fatigue" but is 100% a neurological disorder. Hmm... Living in hope. Ceri


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