Tuesday 9 November 2021

My new normal? Plus new M.E NICE guidelines

With my health conditions especially my M.E and FND I go through dips, sometimes lasting a few days, a few weeks or even a few months before slowly returning back to my old 'normal'. Often however when I'm having a long dip I begin to wonder if this is my new normal. Basically when you have a chronic illness you have you baseline 'normal' - what level of being ill is normal for you and then within that you generally have your good and bad days centred around your baseline and then you go through dips. For some people they can experience a period where they improve but unfortunately I've never experienced this.

Recently I've not been too great especially with my M.E and I've been struggling more. My M.E is classed as severe and has been so for several years now. At first I was just not feeling my best and then I developed a chest infection. As for my my M.E is experienced more as a neuro-immune illness I am more prone to infections and it takes me a while to recover from them. So I just put the exacerbation in my low energy levels and feeling generally unwell and other symptoms down to my body firstly feeling rubbish from both the infection and the antibiotics and then finding it hard to get over my infection. But as time goes on you start to wonder if this worsening of my M.E is my new normal. Alongside that now having a profiling hospital bed at home feels another step into my illness and though having this bed is much better for me and is helping me it's like another confirmation of the severity of my ill health.

For me I've started to wonder this and you begin yet another cycle of grief for yet more loss of your health. I'm grateful that at present I'm having counselling and can talk to my therapist as well as having some really good friends that I can turn to.


Revised M.E/CFS NICE guidelines

I don't want to say too much as I haven't yet been able to fully read the new NICE guidelines. NICE guidelines in the UK are basically instructs professionals on how best to deal with and treat [most] illnesses.

For a long time the NICE guidelines for M.E/CFS (Chronic Fatigue Syndrome) have been pretty poor, lacking, not fit for purpose and for many people with M.E/CFS harmful. The old guidelines as treatments for M.E/CFS have stated that two main treatments to be given are CBT - Cognitive Behavioural Therapy and GET - Graded Exercise Therapy. 

In regards to CBT it mainly made out that the basis of M.E/CFS was psychological as opposed to being a neurological/neuro-immune illness. Then when GET was prescribed to patients for many it did more harm than good. The PACE trial was an absolute disaster and very misleading on how CBT and GET was truly affecting patient and when the true figures for how CBT and GET affected patients it proved just how harmful CBT and especially GET was for people with M.E/CFS. Yes for some people CBT and/or GET did prove helpful but for the vast majority of patients the way M.E/CFS was seen and treated needed to be changed.

I now this from personal experience. There are many different forms of psychological therapy and for me psychologically CBT isn't the right type of therapy for me. Then when I was prescribed GET it was just impossible and made my M.E worse and my body just shut down even more.

In a poll by the M.E Association when people where asked if the agreed of disagreed with the erasion of GET from the new NICE guidelines 100% of people who filled in the poll agreed with GET being removed - link here to the poll results.


The new guidelines

The new NICE guideline for M.E/CFS took three years in the making and the launch was put off as more consultation and investigation was felt needed but now (yay!) they have been published.

GET has been totally erased as a treatment and CBT is now seen as a support tool to help patients cope with the emotional effects of their illnesses rather than it being a treatment to 'improve' M.E/CFS. The new guidelines also have a dedication section for patients with severe and very severe M.E/CFS (which I have read) and some of the recommendations on how to support those patients I felt was very positive and I hope they will go on to help my own care and support needs. For example the new NICE guidelines state that home or virtual visits are recommended and I know from the years of having severe M.E how challenging it has been at times to get care at home. Other little suggestions I liked sure as ensuring that a private room is offered to patients and that the environment is kept quiet and lights are dimmed and personal care is best being given by those that know the patient well who are familiar with the individual's needs.

A link to the new NICE guideline for M.E/CFS can be found here: https://www.nice.org.uk/guidance/NG206