The time to be referred to as being "chronically fatigued" is OVER !
"..we have been treated
as criminals and vagrants. This must end RIGHT NOW! Again, I say "NO
MAS!"There are over 5000 reasons to treat ME as a complex , multisystem, metabolic-inflammatory disease, involving profound dysregulation of the central nervous system, cardiovascular abnormalities and autonomic nervous system dysfunction and ZERO, nada, nil, reasons to treat it as a psychiatric condition.
So:
- Why are there no biomedical treatment pathway on the NHS for people with Myalgic Encephalomyelitis?
- Why is there is no accurate training programme within the NHS to make sure that all professionals from paramedics, through to nurses, orderlies and to doctors and consultants have an accurate medical picture of the disease and know how to provide safe treatment and procedures to people with ME?
- Why is there no hospital or GP provision for the safe passage of people with ME who suffer from noise, light, chemical sensitivity and need separate waiting areas and room to lie down and require longer amounts of time for procedures and investigations and appointments due to the nature of their illness and disability ?
- Why is there is no system of reaching the house and bed bound and treating the most severely affected at home?
- Why are there no biomedical protocols to ensure that every hospital or GP setting knows what to do and how to treat a person with ME?
- Why are the most serious and severe symptoms simply ignored by the NHS?
- Why are patients not being adequately tested on the NHS to ensure that they actually have ME not chronic Lyme disease or other testable but neglected illnesses?
- Why is it acceptable to continue to use the inappropriate umbrella term “CFS” which provides no one with ME a suitable medical service , understanding or adequate investigation of their symptoms and continues to allow inappropriate biopsychosocial pathways to prevail instead of proper medical respect and treatment?
- Why is there no acute hospital ward for the most severely affected?
- Why are there no emergency advice lines specifically for ME?
- Why are GP's and hospitals and consultants allowed to choose whether they treat ME as psychiatric rather than medical illness?
- Why are the most severely affected so shut off from accessing NHS hospital outpatient or inpatient services, they are effectively left at home without adequate medical support reliant on the understanding of GP's without adequate health care monitoring or in depth understanding of the physiology of their illness?
- Why is psychiatry allowed to interfere, control, influence the care and ( lack of ) treatment of people with ME at all?
- Why will the government not make a stand to protect people who currently have the inadequate diagnosis of CFS, ensuring that they are properly investigated, treated and separated from mental health treatment protocols which deny or downplay their physical illness?
- Why are vested interests allowed to dominate ME today, leaving patients without adequate medical respect, proper recognition or understanding of their illness?
- Why are the most severely affected left at risk of misinterpretation and psychiatric abuse still, despite the death from ME of Sophia Mirza ?
- Why is there not a specialist team of highly medically trained specialists available to investigate and treat safely at home, the most ill, understanding the dangers of moving them from a safe environment, without risk of harm?
- Why are all the biomedical research papers which point to numerous physiological dysfunction simply ignored by the NHS and not included in treatment protocols or testing?
- Why is it acceptable and accepted by the government to place on indefinite hold the inappropriate and dangerous NICE guidelines, which were not deemed for for purpose since they were first published by the majority of charities and patient groups.
- Why is there no standard of care training for carers involved with people needing help at home which have ME?
- Why is there is no current consistency of information ? The NHS pathway is unsafe and the description of ME, incorporated into CFS factually inaccurate.
- Why is there a false pretence that people with ME will get better with no medical input ?
- Why are so many ME Charities hopelessly compromised, why are they not all :
- Calling for proper ME aids to be designed and provided for the most severely affected, who are harmed on every level by the ordinary environment ?
- Campaigning for a biomedical, not a psychosocial pathway ?
- Demanding psychiatry be removed from first line involvement in ME ?
- Leading the way in the separation of ME from CFS ?
- Backing high-end ME not CFS biomedical research ?
- Ensuring the ICC Criteria are applied across the board ?
- Raising awareness in the media of the real experience of Severe ME , not this constant promotion of “recovery” and “think yourself well”; the positive image denies the true reality ?
- Raising awareness of the psychiatric abuse of children and young adults with ME ?
- Being a voice to protect, rather than a voice to collude ?
As Thomas Hennessy said : You can NEVER be a
second class citizen without your consent!" AMEN. The time to be
referred to as being "chronically fatigued" is OVER! NO
MAS! Let 2015 be the year we ALL take a stand !!
All I can say is BRAVO! Thank you for writing this, Greg.
ReplyDeletePatricia Carter
why? When is it going to change, what has to happen here. Thanks Greg
ReplyDeleteWell said Greg... the system is a mess!
ReplyDeleteThe influence of psychiatry has done ME patients an enormous amount of harm.
Thank you all so much !! I tell you, after 21 years of never ending struggle, having to witness every moment of every day my beloved Linda go through unspeakable suffering, so especially bad right now, the words "When is it going to change?" are muttered these days between parched, clenched lips, as the rasping gasp of a man beaten down but NEVER broken !! My plea for EVERYONE, for ALL our sakes, to TAKE ACTION, to complain, to not SUFFER for a MOMENT more in silence, to not TOLERATE any more abuse, misrepresentation, misinterpretation are direct from the heart: mass protest, our last and only hope, is long overdue.
ReplyDeleteAs long as ME continues to be called me/cfs, everyone and his dog will continue to say we are "chronically fatigued". Why wouldn't they? That's what it says on the tin.
ReplyDeleteSo until WE OURSELVES ( let alone everyone else) stop calling our illness "me/cfs", there will be NO CHANGE.
Exactly !! The separation of ME from CFS is THE fundamental issue : you are right - its deliberate purpose is to reinforce the "Chronically Fatigued" label. Every time someone uses the ludicrous term "ME/CFS" to describe ME , they perpetuate the status quo: we cannot not afford to wait any longer for change. We must take back our power now and refuse to use any other term other than ME and insist that the Charities, who should know better, do the same. Thank you so much for your comment.
DeleteWe are fighting this battle in the US right now with government health agencies once again redefining "CFS" and this time they are going to use the "ME/CFS" term, saying there is not enough evidence to separate the two. It would be laughable if it wasn't so devastating for patients and loved ones. The ICC gave plenty of evidence and could not have gotten published in the Journal of Internal Medicine without enough evidence!
ReplyDeleteThere was a lawsuit won against the agencies involved by Jeannette Burmeister due to their refusal to provide documents that should have been available to the public. These agencies have not turned over the requested documents, although there were some interesting emails released, with information redacted although they were granted no exceptions to do so in the court ruling.
It's going to be a long, tough battle but Ms. Burmeister is a hero and a champion in this fight, as are you, Greg and Linda. The truth will win out, the question is when and how much longer do patients have to suffer in the meantime?
I completely agree that patients, advocacy groups, doctors and researchers have got to stop using the "ME/CFS" term, but it is so ubiquitous, even among those who have ME as defined by the ICC and/or Ramsay. Even worse is people who don't have ME but are diagnosed with "ME/CFS" saying they have ME and confusing the issue even more. How do we get this to stop without being disrespectful to people who are ill but have been given wrong information?
-Jan
Thanks so much Jan for your brilliant and perceptive comment - you are right - because a range of poor criteria have been used, very few can say for certain - or maybe no one can - if they have ME or not, or some possible curable, or incurable other illness, or mental health issue. Until there is a universal commitment to serious criteria like the ICC, not vague and all encompassing criteria like the CDC, you will not have any clarity or protection. That, I believe with all my heart, is not going to happen anytime soon Jan; there are far too many vested interests : without a massive, universal patient/carer movement . As in all historical struggles, the impetus and direction must come from us, the people , not clinicians, officials, compromised charities. We need to demand the creation of a new Myalgic Encephalomyelitis Care pathway, one that honours the full illness and can define who has ME and who does not. Until then there will be no safety, clarity or protection for anyone.
ReplyDelete