Name: A mother of a child with M.E. (name withheld) Country: Australia [Online]
‘My daughter developed kidney cancer at age 9. It was a very large cancer, very sudden. We were so shocked, the whole family. But we had a great deal of support, a whole support network, medical staff knowing exactly what was happening and helping us to understand, free accommodation and transport in the city (we are country people), and the support for my daughter herself was constant and so important: lots of positive support and friendliness from medical staff, whole areas set up for cancer kids, to make the experience less horrific, special school provisions, from the beginning we had all the support we could possibly need. And that made all the difference.
Although we were still shocked and desperately worried, and it was a ghastly time, it was so much less of a strain on all of us because of the support we received. My daughter herself has very few bad memories of that time, and was able to remain positive throughout, and feel good about herself for being strong and fighting cancer.
However, she didn't get better. Her cancer results were good, but she was still sick, sicker really, because during the cancer treatment, she might be paralyzed by the chemo (it affected her nervous system), throwing up or feverish or in pain, but this came and went. The medical staff space out the treatment so it's doesn't wear you down too much. But now, she was just sick all the time, feverish, in pain, exhausted, dizzy, confused, and of course now we know that was ME. But then we had no idea.
And it started: instead of being the brave kid who had fought cancer so hard, she was a kid with problems. "So there are problems at school, huh? You're not doing well at school?" the doctors started saying in a very unpleasant way. She was really taken aback. She was extremely good at school and keen on everything. They knew that.
"So there are problems at home, huh? Something wrong in your family?" We couldn't win. If the doctors didn't understand it, then it was the child's fault. This is, I think, the cruellest thing that has happened to her. Her self-esteem was attacked, she was questioned repeatedly about personal things, and told she was sick because she didn't try hard enough, because she wasn't good at school, because she didn't want to be at school, because her family was bad, because she liked being sick.
These were so far from the truth, I was amazed that anyone could even imagine them. This was the same child who had struggled so hard with cancer, kept her chin up all the way, and been admired by the same medical staff for her courage, positive attitude, talents and emotional maturity. Now, being sick was her fault.
Cancer is vicious, but you die or get better, basically. Chemo is awful, but you don't suffer all the time, only in bouts of months. You are not suffering at a terminal level for decades, which is what happens with ME.
And you don't get blamed for this horrible thing that has happened to you. That is indeed the cruelest blow. My bright, happy, enthusiastic daughter, who beat cancer, has now had to beat depression, which she didn't have with cancer, and which she didn't have with ME, until she was blamed for her own illness and received absolutely no support, despite being much sicker than she was when hospitalized with cancer. She has developed anxiety problems, which she never had before. She is afraid of doctors, when she had such a happy relationship with all the cancer medical staff. She wants desperately to go to school, despite being told repeatedly that she must be academically unsuccessful, socially inept and lazy.
And she is so much sicker. I have seen her paralyzed with chemo, running high fevers, and almost cut in half after the major operation to remove her left kidney. I've seen her lose her waist-length beautiful hair, have to spend months away from her home, school and friends, and deal with so much stress through the cancer. I've seen her suffer before, and it's the hardest thing any parent can have to watch.
But I've never seen her beaten before. Cancer did not beat her. But ME has.
Yes, ME is a horrifying illness, causing continual terminal suffering for years and years. It's much worse than cancer and chemo.
But I still don't think it would have beaten her like this, destroyed her self-esteem, left her shivering in the dark, if she had been treated like a human being.
Suffering and bewildered, she was blamed for her own illness and treated with hostility by people who have sworn an oath "to do no harm".
My young daughter not only has to cope with the continual suffering and incapacity of ME, she has to cope with being disbelieved, taunted, insulted and marginalized. That's what has beaten her.
Name:
Cilu
[CBT is] not effective unless a person has underlying psychological issues with coping ineffectiveness, as with any other illness.
Name:
SG Country: Australia
I have been through CBT. For help with the physical effects of CFS, it has done absolutely nothing. What it does help with is how I mentally cope with how I physically am. It's also helped my depression, in combination with a SSRI. I had depression long before I had CFS, so I suspect that makes it a different situation than many.
Name:
Johnno Country: Australia
I allowed myself to be referred to and treated by the psychiatric lobby for three years, their diagnosis being post traumatic stress disorder, despite the absence of any specific trauma-worthy inducing factors in my life.
Consultations with psychiatrists turned regularly into discussions about my medication, usually SSRI's and the fact that they failed to address my symptoms at any dose, indeed often making me feel worse, in fact over-prescription causing seratonin syndrome at one stage.
Physiological symptoms were on the whole overlooked or interpreted as somatic manifestations of a psychiatric problem.
In utter frustration I eventually tracked down a professor who runs a ptsd clinic for Vietnam veterans, and after a six week appraisal period with him he came up with the opinion that I had been misdiagnosed, this was not ptsd, as he worked with it every day, and that my problem was physiological and probably neurological rather than the domain of psychology, there being no signs of psychiatric illness present.
So with three years wasted, and having been subjected to drugs which only seemed to inflame my condition I approached an ME/CFS specialist who tests and treats specific symptoms in line with clinical research findings that ME is a neurological disease.
After only a few months, various tests are proving typical ME abnormalities to be present in blood, neurological and endocrine systems, and have been given appropriate treatment.
Already we have mapped Insulin dysregulation; channelopathy problems; adrenal dysregulation; orthostatic intolerance; neurotransmitter dysfunction; and disregulated diurnal sleep patterns.
Bloods continue to show 5 times the normal levels of white cells, showing that the system is trying to fight off a pathogen, whilst a radioactive white cell scan showed no centre of infection, also red cells exhibit the typical clumping reported in clinical research, causing an extremely slow ESR, and blood too thick to negotiate the narrow capillaries of the innermost areas of the brain.
As a result of this scientifically based treatment I have improved dramatically, my most troubling symptoms are under control, and my physician is building up a picture of the systems which are not working in a balanced way.
I gave the psychiatric lobby the opportunity and co-operated for three years during which time I only got worse, and can only endorse from an experiential position the importance of scientific intervention by an informed physician, familiar with the idiosyncratic presentation of ME/CFS.
Dr Shepherd, in many ways the object of this post is to refute the efficacy of the psychiatric-based treatments which you and your co-horts endorse. Three years of CBT and monthly psychiatric consultation failed to address any of my symptoms at all whereas purely scientific medicine has in three months improved my functioning hugely.
My heart goes out to you all in the UK who are being prevented from accessing such vital yet simple intervention, and I support you in fighting the untruths and misinformation which prevents the severely ill from accessing appropriate treatment."
Name: A.H. Fife Country: UK (from letters to RiME)
Before March 1994 I was fit and healthy and employed as a Head of Year and PE / Maths teacher who led a full and active sports life. On 8th March 1994 I suffered a strange debilitating virus which eventually became so bad I was unable to work, (incidentally, there was a cluster of cases of M.E, affecting to varying degrees, a number of pupils at the school.) The NHS solution was that nothing could be done but it probably go within two years, which I refused to accept and set out to find the solutions privately.
During the following three years I deteriorated until in 1997 I was reduced to crawling to the toilet, being carried downstairs and spending the day lying as still as possible due to severe agonizing headaches. In addition I suffered from terrible weakness, muscle aches, severe dizziness, blurred vision, sore throats, sweating and shivering, swollen glands, highly light and noise sensitive and digestive problems. I was barely able to sit up to eat, unable to watch TV or even converse for more than about 5 minutes,...
Every day, seems like eternity, spent enduring pain, feeling so ill, like your blood has been poisoned, with the frustration of being trapped inside a useless body, unable to concentrate and needing assistance to do the most basic tasks. For a couple of months I suffered the humiliation of being unable to feed myself. Whilst I am able to do this now I still need help to get to the toilet, to wash and dress etc. it is like the seasickness adage. First you feel so ill that you are afraid you’re going to die and then it gets worse and you are afraid you are not going to die. I and most other sufferers, adopt a determined, positive and proactive attitude, which no doubt contributed to ME in the first place. Merely surviving these eight years of hell has been a far greater achievement than any of my academic qualifications, sporting achievements or job promotions.
Over eight years I have spent thousands of pounds, in vain, seeking a solution from many sources including ME Consultants, Acupuncture, Osteopathy, Homeopathy, Herbal medicine, Nutritional therapy, Kineseology, Hypnotherapy, various healers, very many nutritional supplements. Immunogiobin, B12 and magnesium injections with little or no help from the NHS.
Governments, researchers and fundraisers need to realize that it's not just about saving lives but quality of life and that with severe ME this is zero. Society would not let animals go through such suffering and incapacity but ME sufferers are left to exist in a "living death" state for years sustained only by the distant ray of hope of recovery and a positive attitude that keeps you fighting and thinking that it's got to get better soon even after 8 years of disappointments.
Insult is added to injury by the fact that some people still believe a bit of graded exercise and some positive thinking is all that stops sufferers getting well. I used these methods to recover from an accident when I received 25% bums but with ME this results in deterioration rather than increasing my capacity. If only that was the answer I'd never be in this hell I'd have been well years ago enjoying a wonderful life that I had before ME.
It is a disgrace that there is no government funding research into aetiology of ME, (the only funding is provided through charities and donations, for an illness, which affects an increasing number of people of all ages) I urge you to ensure that this criminal neglect is ended now with desperately needed funded research into Neurology, Immunology, and other areas of dysfunction Severely affected sufferers must be included in any study, not just those well enough to attend the trials.
Name: N.B. Country: UK (from letters to RiME)
When first ill, after two and a half years in bed, I spent six and a half months in a psychiatric ward - the only help they offered on the NHS, I did graduated exercise and CBT, It did not cure me, I am still badly disabled with ME after 12 years and use a wheelchair,
Name: S.M. Country: UK (from letters to RiME)
Over 13 years ago my brother contracted an unknown illness rendering him bed bound and hospitalised at the age of 18. In hospital he underwent tests and was put on a program of graded exercise which left him flat out, bedridden, hardly able to speak or feed himself and unbelievably in the geriatric ward, a totally unsatisfactory and inhumane treatment,
My parents took him out of hospital and have cared for him at home, trying to understand this illness. Until 18 months ago he had made progress and had reached a level where for short periods of time he could watch TV, use the Internet and get around the house in a motorised wheelchair. But after trying to get better to everyone's disbelief he deteriorated to a condition even worse than before.
He is now lying in bed in a darkened room, again unable to stand light and sound, unable to sit up in bed or even roll over. He can only move his forearms and speak for extremely short periods of time. He is being cared for, spoon fed and toileted by my parents and has absolutely no quality of life. This leaves my parents with a life of hard work and stress beyond belief and no rest.
I believe the only way forward with this illness is for the medical research council to fund proper research as stated on the petition. Everyone is entitled to some quality of life.
Name: J.S. Country: UK (from letters to RiME)
Severe ME is not cured by cognitive behavioural therapy anymore than a severe type 1 diabetic would be, who is in need of insulin.
