“Sleep is that golden chain that ties health and our bodies together.” –Thomas Dekker
M.E. patients are often nocturnal creatures- not by choice but as a consequence of their illness. It is a bitter irony that many of us feel the desperate need for sleep during the daylight hours but as soon as nightfall sets in, so does the insomnia or unrefreshing sleep.
This is from the Living with CFS blog.
Other useful sites with help for sleep problems are:
Health Rising blog
Attempts are being made to set up a new umbrella organisation of people involved in campaigning about disability matters. Called the National Disability Organisation, the rationale for it is aptly summed up in Jayne Linney’s recent blog.
Carol LeFelt writes in Health Rising:
If ‘malaise’ doesn’t adequately describe my dreadful condition after too much exertion, it does fit another consequence of ME/CFS. After so many years of trying to pace myself successfully (whatever that means, since my over-taxed level seems to change from week-to-week or even day-to-day), a kind of ‘malaise’ has settled like dust into my bones and brain, bringing boredom and lassitude (mental weariness, listlessness or languor).
Read more: More Musing on Malaise
Chronic fatigue syndrome is real and doctors should take it seriously, the influential (American) Institute of Medicine said in a report issued this week. The report goes on to say it needs a new name to distance it from the stigma of being an imaginary illness, and doctors need clear criteria to diagnose it.
“The committee recommends that this disorder be renamed ‘systemic exertion intolerance disease’ (SEID),” the panel of experts said. “SEID should replace myalgic encephalomyelitis/chronic fatigue syndrome for patients who meet the criteria set forth in this report.”A just released IOM report not only proposes a new way to diagnose ME/CFS, but came up with an entirely new name for the disorder as well.
“The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real’.”
The committee also has a recommended list of criteria for doctors to use to diagnosed SEID:
- A substantial reduction or impairment to work, go to school or live a normal life that lasts for 6 months or longer that isn’t helped by rest
- Feeling unwell after exertion
- Waking up still tired
Patients must also either have cognitive impairment – thinking and memory problems – or orthostatic intolerance – a broadly defined set of symptoms that includes dizziness when standing up and other impairments.
Cort Johnson has an excellent blog about this on his website ‘Health Rising’. Here
DWP brown envelope arrived today. Result of ‘Mandatory Reconsideration’. No change. What a surprise! Who would have guessed?
I do wonder how many people go for mandatory reconsideration and then give up. Probably quite a lot of deserving folk for whom the whole process is just too much. Does mandatory reconsideration ever reverse a decision or is it just another ploy to wear down tired old gits like me?
On with the appeal …
There seems to be a problem with how the DWP interpret distances when they determine how far we are capable of walking to set the level of PIP awarded. In the application form for PIP the tick-box options for distances applicable to deciding the awarding of high or standard mobility are:
- Less than 20 metres
- 20 metres to 50 metres
However, Schedule 1 part 3 (2) of the Social Security (Personal Independence Payment) Regulations 2013 (as it appeared 16/12/2014 on the legislation.gov.uk website) contains the following definitions:
- d. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10 points
- e. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12 points
‘Less than 20 metres’ is completely different to ‘no more than 20 metres’. One definition includes 20 metres, the other doesn’t. DWP have introduced confusion over whether a distance of 20 metres qualifies claimants to extended or standard mobility by introducing an application form that does not mirror the regulations. So which definition are DWP using to determine eligibility? Doh!
The difficulty is that I have been given standard mobility award because during the assessment I used the term “up to 20 metres” According to the case manager, if an applicant mentions 20 metres, e.g. says ‘up to 20 metres’ like I did, the assessor will automatically put him/her into the longer category. Another bit of benefit saved!
Very interesting article looking at the links between poor and unrefreshing sleep and ME/CFS and the efficacy of various treatments. I was particularly taken by the suggestion that there might be a link between the neuropathic pain I have, particularly at night, and my own difficulties in getting to sleep.
A recent study found that neuropathic pain activates a part of the brainstem (the locus coeruleus) that promotes wakefulness. Another study found that neuropathic pain induced the firing of serotonergic neurons, again in the brainstem, that increased wakefulness and reduced deep sleep. If these studies are correct it’s not the pain per se that’s keeping people awake, but the promotion of wakefulness by the brainstem. Bansai recently proposed brainstem problems could help explain the extraordinary debility and sensory problems often found in the most severely ill ME/CFS patients.
The full article is in Health Rising.
Well, the big brown envelope dropped onto the mat this morning and I opened it with some trepidation. Bad news!
For mobility, they have decided contrary to all the evidence that I can walk much further than I actually can, so it’s only 10 points here and a move from enhanced to standard. This means that I lose my Motability car early in the New Year.
For daily living I lose the benefit entirely even though I cannot manage to cook for myself. (To add insult to injury the letter says that I lose this benefit from last April – whatever that means!)
Onto the appeal process, which I understand will take most of next year …