The Lived Experience of Severe ME
(voted one of the top 50 ME blogs on the internet 2017.)
A question from Linda on cognitive dysfunction :
The word ' cognitive dysfunction ' covers a wide range of distressing and disturbing communication difficulties which seem yet again to be down played , under-described in symptom lists and not taken seriously enough by the medical profession.
"Brain fog" is the classic name we use to cover over the horrible reality of living with a brain that is not working properly. In my experience the cognitive dysfunction is profound , intimately connected with and difficult to separate from the interaction with profound noise sensitivity, eye pain, blurred vision , photophobia, loss of motor control and ability to control physical function .
For me cognitive dysfunction causes massive problems with receiving, processing and comprehending information, whether visual, auditory, tactile, from an external source, as well as thinking ,imagining, visualising, remembering and comprehending information and speaking it.
Answering questions directly becomes virtually impossible. I can lose all connection between my thoughts and my ability to speak them.
I may hear but not be able to understand.
I may want to communicate in writing , yet I am completely unable to hold a pen, type a single letter, connect with my thoughts to explain them verbally.
Anything requiring information coming into my brain - then some thought process, followed by action is unlikely to happen 99% of the time.
I simply have breaks to connection and action and communication in every way. This is not conveyed in my opinion nor taken seriously by the medical profession and certainly not in the poor criteria used to supposedly identify ME, which fails us all so profoundly.
We live in effect with a form of dementia, yet it is not treated as such.
We live with damaged brains yet how many doctors do you see representing it like that and trying to treat it with the medical respect and acknowledgement it deserves?
I am able to convey some outward thoughts if they happen to be accessible in my brain at a particular connected moment. They come rarely.
I am frustrated by the lack of integrity surrounding the representation of ME and hope to put together with Greg's help ,at some point, a document to raise awareness of just how very severely affected the person with Severe ME actually is.
Greg also intends highlighting these issues in the coming update of his book," Care for Someone with Severe Myalgic Encephalomyelitis."
If you are able to and are willing to share your own experience, conveying if possible how complex and disabling brain fog actually is - and you do not mind being quoted anonymously, please tell us; it may not be possible to use all material.
We live with horrendously disturbing and distressing symptoms. We deserve much better recognition of what we go through.
Stonebird 27th July 2017 Sir Andrew Dillon, Chief Executive, NICE Dear Andrew Dillon, Re : Myalgic Encephalomyelitis I have cared full time, for 25 years, for my wife who has a diagnosis of Very Severe ME, my Nursing Standard article "Supporting people with severe myalgic encephalomyelitis" is referenced by NICE in the original 2007 guidelines. In 2015 I was third place finalist, BJN, Nurse of the Year, for which I received an award specifically for my work in raising awareness of and advocating
for people with Severe ME. I was Secretary of the 25% Severe ME Group charity for many years and represented the Group at the Gibson Parliamentary Inquiry. In February the Joint Commissioning Panel for Mental Health document published Guidance for Commissioners of services for people with medically unexplained symptoms – practical mental health commissioning, which misinformed Commissioners that Myalgic Encephalomyelitis is a Somatoform, mental health disorder. The response, in a letter to me…
Stonebird Greg Crowhurst Aug 30th 2017 On July 27, I wrote to Sir Andrew Dillon re Myalgic Encephalomyelitis. This is NICE’s reply, dated 29th August. I have added the questions I asked and made some brief comments. Thank you for contacting the National Institute for Health and Care Excellence (NICE) regarding our guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):
diagnosis and management (CG53), Sir Andrew Dillon has asked the corporate communications team to respond on his behalf. I appreciate that this is an important matter for you and I have addressed of your questions in turn below. In March this year we advised you by email that we were unable to comment on how another organisation interprets our guideline and this is still the case. If the JCPMH have referred
to our guideline in a different way then you would need to take this point up with them directly, NICE is unable to get involved. Comment: Despite my best efforts, letters to the Department o…
(This is taken from :
“Severe ME : Notes for Carers” : http://stonebird.co.uk/Notes/index.html) Many world-class clinicians state that ME is either an infectious disease, or
an auto-immune disease as a direct result of infectious insult and recognise ME as a complex neuro-immune disorder accompanied by chronic low-grade inflammation, increased levels of oxidative and nitrosative stress.(Maes et
al 2014), requiring a skilled biomedical response. ME was recognised as a specific disease entity by The Royal Society of Medicine
in 1978 and by the World Health Organisation since 1969 as an organic neurological disease, ME is currently classified under ICD code G93.3. In the USA, ME ranks second only to HIV as the cause of serious, long-term illness.
(Hooper 2004)Cycles of severe relapse are common, as are further symptoms developing over
time. Around 30% of cases are progressive and degenerative and sometimes ME is fatal. (National CFIDS Foundation). Two reviews have concluded that, “Subs…