My illness path is littered with wrong decisions, wrongful trusting in people and systems who should have helped me, but instead damaged me, even with good intentions, then ducked out of the responsibility of putting things right or owning their mistakes, wrong treatments, misinformation, misinterpretation, misrepresentation and downright harm, which has ultimately led to trauma and deterioration, alongside just simply letting me down.
It takes a long time to feel able to talk about abuse, when you feel you have experienced it first hand. It takes time to tear yourself out of the sense of shame and fear that it engenders in you. Fear that wraps itself around your every thought and burrows deep into your guts, like some dirty unwanted parasite, burrowing in deeper and deeper, gnawing destructively within you, out of sight.
It is hard to actually say,' I have been abused.' It still creates anxiety and anger, to think about the experience, let alone speak of it. All you want to do is get away from it and the perpetrators of your distress. Distress, perhaps too small a word to describe the actual reality of its impact.
And yet, I need to speak of it. I need to express it. I need to get it out of my system. I need to warn others. I do not want any one else to go through what I have been through, through misplaced hope, through ignorance and wrongful trust in people who did not deserve it, however nice they seemed. Yet still it is hard to write it.
In reality the shame does not belong to you, who has been harmed, disempowered, dishonoured, damaged by the perpetrators of abuse, it belongs fairly and squarely with them, yet they do not own it.
It is so easy to abuse a person with Severe ME. They are so vulnerable and so in need of hope, so desperate for treatment. There is so much confusion around ME because there is so much misdirection, misrepresentation, misguided treatment and different meanings for the same label.
When you have Very Severe ME, you are the most vulnerable of all, for anything you try can so badly damage you. The risk is great in trying anything. You need to feel safe. You need to trust what people tell you. You need to know you are in safe, aware compassionate hands. You need to know that there will be dialogue, reflection and an openness that nothing is set, that nothing is definitely known, that flexibility and insight are required. You need to know that the person offering to help you actually knows about your illness, your reality, your physical dysfunction, especially the post- exertional reactions.
You need to know that they actually mean that they understand about ME when they say they do, that they are not just misinterpreting it as a fatigue condition or misrepresenting themselves as experts in a field they actually know little or only something, about. And how could they know a lot about Very Severe ME when no one researches the people who have it and even if they say they do, the criteria to identify cohorts, are not generally clear or safe enough? You need to know that when they say ME, they are not talking about CFS/ME, meaning fatigue, but actually understand about neurological ME and multi - system dysfunction, with severe to extreme post- exertional autonomic reaction.
You need to know that they will listen and take on board what you say. You need to know that they will not harm you or consider a bad reaction as acceptable. You need to know they understand the risks to your physical body when they make recommendations, you need to know they will think about your reaction and support you, that they will have thought through and been aware of the possible impact of any treatment and discussed the dangers, the potential for harm, the risk involved and that they will have recommendations for what happens when things go wrong.
You need to know that they know what the f..k they are recommending to you, including side affects, if you trust them, because they say they know what they are talking about, if they tell you that you will be well enough to travel if you follow their regime, if they say they are right,mif they tell you to keep doing something that is actually damaging you.
Sadly, when you have Very Severe ME, you have massive brain fog and inability to think or process information. You have to trust others to represent you. You ultimately have to discern what to do, with a brain that simply does not help you think through things and understand fully the dangers and potential consequences. Sadly, you cannot always know who to trust and you cannot always assert yourself or check things out adequately, despite your best efforts. Sadly it is too easy to be misunderstood and harmed and not easy to get justice or compensation for the damage done to you.
The shameful thing about abuse is that it is always about misuse of power. There is no greater misuse of power than what is happening to vulnerable ME patients across the country in the wrongful use of CFS to mean, but not actually represent ME. It is my considered opinion that people with ME are at just of much risk of harm and mistreatment from doctors, nurses, therapists, who interpret ME as a fatigue condition as they are from wrongful psychiatric input. It has been my own experience, which has led to this insight.
When I was at my most ill, fragile and desperate for medical help, I was recommended to use a Breathing mask to "treat" my hypersensitivity. I was assured that it would help me. I was advised that it would enable me to be less sensitive so that I could travel across the country within a 6 week time span to get further treatments in hospital, if only I followed the instructions, using it for a minimum of half an hour at a time for 4 hours a day. I was told it would help increase my carbon dioxide level which was too low, which I was assured was my basic problem, despite there were other serious underlying issues and I had a diagnosis of Very Severe ME by a respected clinician and further, I had been down that futile hyperventilation path before.
I actually had such Severe ME that I could not hold a two way conversation due to extreme noise sensitivity and cognitive dysfunction and had lived in a continuum with complete paralysis on a daily basis for twenty years. I was in such agony that the whole of my head and neck were extremely hypersensitive and inflamed and could have no pressure or contact whatsoever. Despite I was so frail and ill that we had specifically said that I could not engage in any treatment that might cause further risk to my health or make me worse in any way, still this harmful recommendation was made and insisted upon.
I am not a doctor and I do not clearly understand all the physiology underpinning my illness. Unfortunately I trusted other people's recommendation and judgment because I had become so profoundly and frighteningly ill and thought they understood. The problems with the premise, it seems now, were in fact many.
If indeed you do have hypocapnea,( low CO2) I now know that you need to treat the underlying causes, but these were ignored, as if hyperventilation were all that was wrong, despite I was not obviously hyperventilating and had already undergone breathing training in the past. I understand that in fact low CO2 can be caused by many things going wrong in your body, not just breathing, for example mitochondrial dysfunction, thyroid dysfunction, poor methylation cycle pathways, environmental poisoning, to name only a few.
Trying this damaging mask did nothing but harm to me physically and traumatise me emotionally. It caused me to physically collapse after 15 minutes every time I attempted to use it, which led to whiplash in my neck and increased inflammation and extreme head pain that was so profound that I thought I was literally dying. It seems that this was in fact pushing me in to adrenal crisis. It caused my diaphragm and back muscles to weaken and my breathing to worsen, it caused me to feel as if I had been kicked in the guts and the back for many, many months after using it. It caused further difficulties with sitting up, because it affected and weakened my muscles. It caused me to vomit so violently I could not breathe.
I have never experienced vomiting like it, the contractions in my throat went on so long. It caused extreme cognitive dysfunction and blankness in my head. It caused massive hyperventilation after using it, resulting in over- exertion of my diaphragm and chest muscles, as if I was doing heavy exercise, which is contra- indicated and dangerous in ME. The post exertional impact was not warned about. It created difficulty in breathing, particularly lying down, such that I am still negatively affected today as a result of its impact, because I wrongly trusted those who recommended it. They came into my life and then left me in havoc and have not taken responsibility for the damage done to me.
I expected discussion, support, understanding, to adjust, to reflect and help me. It seems that I had been naive in my trust and faith. Instead of supportive dialogue and alternative suggestions, of dismay that it was hurting me and unachievable, of suggestions how to put this right, all I got was an insistence to keep doing it - in effect to keep harming myself. I asked for guidance for a safe posture to use it. It was not forthcoming.
Worse still I received inaccurate reports, now on my medical records. Dangerous reports open to misinterpretation. Reports still not put right today because of a refusal to engage and cooperate in continued dialogue, a refusal to change one word, a refusal to accept the treatment was harmful and wrong for me.
Not only this, but I was actually blamed for not complying with this regime. I had unfortunately engaged in what became a self - harming treatment and only stopped because it was so damaging and impossible to continue, with unrealistic demands.
Well over two years on I am still left harmed by my experience. It was nothing less than traumatic, dangerous and distressing.
All I can say is BEWARE. BEWARE of experimental treatments, particularly using a breathing mask, if you genuinely have Severe ME. Check out what people mean by what they say, also check out, if possible what they are likely to write about you.
Make sure there is a risk assessment for any recommended treatment, particularly if your health is very frail
Make sure that anyone treating you and you yourself understand the possible side effects
Make sure you know what the potential for harm is
Make sure that there is a plan for what to do about any bad reactions.
Make sure there is thorough testing and results checked before such treatments are instigated, to ensure safety as much as possible.
Make sure there will not be a blame game if it doesn't work out.
Make sure that you don't end up with inaccurate reports on your medical records that misinterpret or misrepresent you.
Make sure you do not feel worse and more insecure afterwards, than you did before you sought treatment.
Make sure if you are relying on others to represent you accurately, that they can, they will and they do.
Anyone with adrenal insufficiency, which I now know that I have, would be at risk presumably of harm from such treatment, potentially pushing a person into adrenal crisis...but it was not tested for in my case. Yet many people with ME have hormone imbalances due to the shift in the HPA axis and result in adrenal insufficiency. It should have been recognised or at least checked first.
I am still ashamed and embarrassed that I got caught up in this treatment and false hope and relied on people who did not deserve my trust. I am also devastated by the trauma I was put through. It is hard to share this experience, but the best outcome from abuse is knowledge and that knowledge needs sharing. People need protecting from this type of treatment. People with Very Severe ME are too ill to be guinea pigs. They do not need false hope. They do not need wrong treatment. They need serious medical investigation, nothing less
Make sure, as much as possible, this does not happen to you.
Stonebird response to “ME/CFS is an organic disorder” by Professor Malcolm Hooper
If the case of Ronald Page v Simon Smith; enshrined in English Law, in 1996, that ME is physical not psychiatric (Hooper 2014), why has the NHS and DWP used psychiatrists known to believe and promote ME as psychiatric, to advise them on policy and practice, on the fatigue clinics, the psychosocial pathway, the treatment protocol and the MRC research funding for the last two decades when they :
· ignore the science and the physical reality of ME?
· are determined to “eradicate” ME by asserting that it is nothing more than an “aberrant illness belief” ?
· focus on the single symptom of chronic “fatigue” and ignore all the other significant symptoms and signs of ME, especially the cardiovascular, neurological and immunological ?
· deliberately dilute the case description so that it specifically includes somatisation disorders ?
· advise that no tests should be performed on those with ME to confirm the diagnosis, other than the most basic screening, which is universally known to be normal in ME and will not show up the complex dysfunction ?
· have no expertise in the areas of complex medical science such as immunology, vascular biology and muscle pathology which underpin ME ?
Surely this is against or outside the law?
In the UK, there is no act of parliament setting out patient’s rights, however the NHS must take account of law made by parliament (e.g. Mental Health Act, Human Rights Act etc.) or by court judgments. Health professionals must use reasonable care and skill and patients are entitled to receive care of a standard which a “responsible body of medical opinion” considers to be appropriate to their condition . If the duty of care is breached, the patient may be able to sue for negligence.(NHS 2006)
Any registered medical practitioner – consultant or GP - who chooses to dismiss or ignore widely available biomedical evidence, is in clear breach of the legal requirement for doctors to keep up to date with developments in medicine and medical science (GMC 2013) ) and this consequently raises issues of medical indemnity.(Hooper 2010 )
There is a principle in law called stare decisis; once a point of law has been decided in a particular case, that law must be applied in all future cases containing the same material facts; Ronald Page v Simon Smith has set set a judicial precedent. Under the Equality Act 2010, the DWP must take “due regard” of case law, to eliminate discrimination. (Patel R) Yet the daily experience of many ME patients is still one of active bigotry .
Why has the government done nothing to reflect the importance of the Master of the Roll’s 1996 judgement in its dealings with ME?
Hooper M (2010) Magical Medicine http://www.meactionuk.org.uk/magical-medicine.pdf
Hooper (2014) ME/CFS is an organic disorder http://www.meactionuk.org.uk/ME_Judgments.htm
NHS (2006) Rights to Treatment http://www.nhs.uk/ipgmedia/national/Rethink Mental Illness/Assets/RightstoNHStreatment.pdf
Patel R Case Law http://www.thompsons.law.co.uk/ltext/127-case-law-public-sector-equality-duty.htm