NICE Guidelines: - Ramsays Disease
Please select all that apply:
Dear Bagend, I'll be quite open here, that I have sought treatment for emotional trauma, specifically a combination of EMDR and CBT. Whilst this has helped me emotionally, untangling complex trauma and also enabling me to better understand and manage some tough dynamics, the process has improved my emotional well-being whilst taking a toll physically, so for the last 6 months I've had to stop that. So my question is, what kind of change are we seeking to record - physical or emotional or simply as a whole? Because I'd say for me the intense effort I put in to 'do' the therapy took more energy than I've really got (and so leading to a hopefully temporary physical set back, nonetheless lasting months, bedbound). And that said, had I not done it I would have been in a worse position emotionally. So I recorded no change, because the answer would be 'positive change emotionally, negative change physically' - just in case this helps to know. Thanks for making the poll.
Understanding everything is tiring treatment included we get more from any help with understanding.
Be gentle with your self RocKRose Gentle Hugs
Such empathy of a gentle soul touches me Slowmotion,
softens and soothes, I so appreciate
Gentle hugs x
Can I speak for areas where no treatment is offered and the very severe that are 25% of our number deserving equally of care/treatment from NHS.
Absolutely dear Seascape, you surely can and must...and these days I join you, in that 25%
So a voice for those who most times voiceless..
And I discover, seems as if 'signed-off' yet just left to fester, without enquiry, nor home visits from Dr or OT...
For me, the current (filament) of hope at present, is trusting in the empathy of someone in social services as they do an in depth health & social care assessment...
Wonder if you've experienced that 'loop' so far, if you wish and feel drawn to share...Always respecting either way, for each molecule is precious 
x
A lack of long term services do a course then abandoned when chronic illness should have a long term plan of support from everyone involved. A joined up service where doctors consultants O/T pharmacists social workers communicate not passed around as a hot potato making things worse.
Yes, joined-up would be far smoother, Seascape, I really agree with you.
Also possibly shared reports (at least for me would make sense), saving having to communicate over again when energy precious.
I'd also include home visits/review by OT and Dr, as I believe may happen in some areas?
Another idea, occurring to me (I realise not a new one, yet would make a world of difference), to integrate health and social care, more, perhaps 'triggered' by GP once they know someone chronically unwell and struggling, saving long months of struggling- on then having to find-out what's available, needing to ask and wait more months for response...having to share the history from scratch...Would possibly prevent further deterioration...and perhaps help enable enhanced levels of functioning sooner?
Curious whether this chimes with anyone else's perspective?
I have also had a course of CBT and did one on my own with the help of one of the original books on this therapy. I found it very helpful in dealing with several important emotional problems I had. I am grateful for the CBT because it enabled me to recover from Post Traumatic Stress Disorder following some severe abuse. This abuse happened shortly after i was diagnosed with Fibromyalgia; so although the symptoms began before the abuse, I experienced the worst of them and the PTSD at the same time.
It was a very confusing mess. I had a couple of good counsellors, and that helped, but most of the necessary work I had to do by myself, as each counsellor was limited in how much they could do, as well as by their own particular views on my illness and my abuse situation.
The CBT helped me recover from the abuse and learn to separate various symptoms and problems I was struggling with. It also helped me learn to be confident in understanding signals from my own body and intuition.
Re-read that last paragraph I wrote. Now think about it, and answer this question:
If a therapist giving a course of CBT to people who suffer from a multi-symptom disease does so by adjusting the course's objectives and messages (even very slightly) to nudge the participants in the direction of believing that their beliefs about illness, rest, pain, fatigue, and exercise could likely be responsible for a great deal of their pain; that in order to 'move on' from the suffering they need to stop focusing on pain and symptoms and simply think of themselves being well, exercise and think about how the exercise is going to make them better, etc.
-- what is going to happen to their body, their illness, their pain and fatigue levels should they follow these subtle or overt directions?
-- what will likely happen to their ability to pace their activities so that their bodies can heal?
- what will likely happen to their ability to pay attention to subtle cues about this illness' development or ANY illness' development?
Telling anyone even gently, that they should stop paying attention to pain and fatigue signals is the opposite of common sense.
That is one of the huge flaws in this programme. I have read research abstracts and introductions to sufferers and articles about these illnesses by some of the people in charge of these clinics and programmes. They are taking huge risks with people's health because they believe that these illnesses have no basis whatever in current biomedical illness. They often believe that a prior illness has led to wrong illness beliefs, or caused the person to become deconditioned.
I believe that CBT is great for some problems people have, and it is great to help people come to terms with and adjust their lives to living with chronic illness.
But many of the programmes being offered for ME and Fibromyalgia patients overtly or subtly tell the students/patients that what they suffer is caused by their own minds and attitudes and can be changed by the same.
We don't need another false hope. We don't need to be told that if it weren't for our attitudes or beliefs, we would not be so ill.
What each of us need is a doctor who believes in us, believes what we tell them about our experience and our body, and works with us to find ways to address symptoms. That's what the report is advocating and that is what the second part of the report is intended to talk about. I can't wait to read that second part.
As for GET, well, it's about as horrible and inexcusable as setting up a programme for everyone with a broken leg to be trained to run a marathon on that broken leg.
Hope this is not too long or too preachy. By now most of you know I can hardly help myself when i feel strongly about something.
I want to clarify that the CBT I had was in its original form rather than specifically designed to be a treatment for ME and Fibromyalgia. But it is not a good therapy for anything and everything. It works for some things and for some people.
CBT aimed at changing illness beliefs should not be included in the guidelines, any use of this therapy beyond adjusting coping strategies will be counter productive, encouraging boom and bust by ignoring bio medical evidence.
If GET were a drug it would not have passed phase 1 clinical trials as the harms caused far outweigh any benefit. Pacing education, pain management where appropriate, sleep hygiene guidance and patient involvement in treatment protocols are the beginning of where the changes should start.
Doctors must ensure patients are aware of material risks about treatment giving a percentage likelihood of it occurring, other wise the advice is meaningless. This is a legal duty of care which has changed from using the shield of guidelines / chosen research, the risks of harm from GET are well documented and patients must be made aware of this or face legal action for damages.