Saturday, 23 September 2017

An Overlooked Issue in Fibromyalgia? Study Highlights Problems Standing (Orthostatic Intolerance)

The autonomic nervous system rears its head in fibromyalgia – again. The pattern in fibromyalgia is now pretty clear; the fight/flight (sympathetic nervous system) system is activated even during rest, the heart rate response (chronotropic incompetence) to exercise is in the pits, and the sympathetic nervous system – overactive during rest – poops out when under stress. Plus the baroreflex response, which maintains blood pressure, and regulates autonomic nervous system functioning, is not working properly either.

An Overlooked Issue in Fibromyalgia? Study Highlights Problems Standing (Orthostatic Intolerance)

Wednesday, 24 May 2017

DWP Admits Mandatory Reconsideration Are Rigged

The DWP have as good as admitted that mandatory reconsiderations are a sham.
In response to a recent Freedom of Information query, the DWP revealed that they have a target of upholding the original decision in 80% of all mandatory reconsideration requests.

Worse still, they managed to exceed that target in the year to March 2017 by turning down 87.5% of all applications.

The DWP have since claimed that PIP is not included in the 80% target.

However, it remains the case that over 80% of PIP mandatory reconsideration requests also fail to get the decision changed – however coincidental the DWP might claim that figure is.

Having a target for the percentage of requests that should fail almost certainly renders the mandatory reconsideration process unlawful.

DWP Admits Mandatory Reconsideration Are Rigged

Friday, 17 March 2017

How the Edwardians Spoke

As a linguist and a singer, being fascinated by accents and from my interest in studying my family history - my grandfathers and great uncles all of whom served in WWI - this has been the most fascinating and interesting documentary I've seen in a long time.

How the Edwardians Spoke

Thursday, 9 March 2017

Walk for ME 12 May - 25 May 2017

Walk for ME 12 May - 25 May 2017
Into it's 5th consecutive year of fundraising, Walk for ME aims to raise money for biomedical research into myalgic encephalomyelitis (ME), also referred to by the derrogatory term, Chronic fatigue syndrome (CFS).

The reason it's called Walk for ME - the whole idea is that a friend or family member is doing something that their loved one would love to be able to do but can't because of their illness - is because one of the main symptoms of the condition is exercise intolerance, which brings on Post-exertional malaise (PEM) and intolerable symptoms including pain, fatigue, muscle cramps, headaches, dizziness, nausea and vomiting. 

It has been shown to be harmful for ME sufferers to attempt physical exertion and doing so can cause a permanent reduction in function, even rendering sufferers completely bed-bound, sometimes being tube fed, in approx. 25% of patients

It will be hard to grasp, but I know that I could so easilly find myself in that situation when just standing causes all of the symptoms above, as well as crippling stomach pain and, as I cough and choke and have trouble swallowing frequently at times when I'm especially fatigued - from something really simple, like an hour or so's outing. 

You may know something of my story, but for those who don't, here's the short version:

I've had symptoms of ME at least since contracting Glandular Fever (Infectious mononucleosis) at age 16 in 1973 from which I never recovered. (It may even have begun earlier.) In the early days, I was functioning, but notably more fatigued than I used to be. My GP told me I was imagining it. By the 80's/90's it was clear that I was a lot more fatigued than other people and I knew I had what was then referred to as "Yuppie Flu", but I wasn't about to go and get myself labelled as such.

By 1995, I was no longer able to hold down a job nor earn a living.

Being written off by the medical profession too - a large part of which in this country treats ME as a psychological condition (which it is not) - it took until 2008 to get ANY diagnosis at all, during which time I was treated as a liar and even subjected to threats and bullying as a result of other people's ignorance of this condition.

As time has passed, my functioning has gradually reduced - I fluctuate between 70% and 80% impaired as per the descriptions on this M.E. Disability Scale - and symptoms such as Orthostatic intolerance have become worse and more disabling.

Accidents, other stressful events and further diagnoses of Fibromyalgia, Cervical Spondylosis and Arthritis and all contribute to a worsening of my health overall.

I've now been ill for at least 44 years with no treatment and no cure - can you, honestly, imagine the sufferers of any other condition tolerating such level of neglect - so it's well overdue that this condition get some serious research, which is why I'm choosing to support this fundraising effort, every penny of which goes towards the search for a cure. 

There is currently no accepted cure and no universally effective treatment for ME.

I'm not going to ask you to walk, run, swim, skate, jump, hop, hike, ride or climb on my behalf - although I won't object - but I would like to ask you to consider donating to one or more of the existing Walk for ME 2017 initiatives at JustGiving.

May I perhaps suggest Walkies for ME 2017

And I make no apology for it, but I'm going to nag you about this every couple of weeks between now and the May 12th - 25th event, because it is so important to the quarter of a million or so people in the UK alone who have lives on hold, whose education and careers, relationships and dreams are disrupted while they generally get no effective help. And please share and repost this so we can reach more people. Thank you.

Tuesday, 6 December 2016

A Day on a Fact Finding Mission (with more pics)

Down back alleys

Across the park

Terraces at the end of Belmont Road

Tiverton is dotted with pretty terraced cottages like this.

More terraces further down Belmont Road

Found this a few yards down the road.

And these two reprobates are continuing to make themselves very comfortable.

Monday, 5 December 2016

Day 5 in Tiverton

Junction of Newport Street and St Peter Street, Tiverton this morning.

A much needed bucket of red
last Wednesday night.
For those of you not following on Facebook, our move to Tiverton last week has been something of a whirlwind. After years in the barren desert called New Milton, we've been inundated with things to do over the last few days including seeing the infamous pants (Christmas lights), meeting Mango (the Tiverton Tesco Cat), having a fun Friday night out at the karaoke, adopted some moggies, spent Saturday evening at Electric Nights Streetfood, went to the Tiverton Annual Christmas Market and out for Sunday Lunch.

As I've already said, we've done more in four days in Tiverton than in four years in New Milton - because, obviously, there actually is stuff to do. And it's all in walking distance.

This morning, I walked into town again to go to the weekly Antiques and flea market. (With luck, I won't have bought too many fleas!) I did buy a scarf for £1 and a blue enamel teapot for £4. In one charity shop I bought two large books (Nigella's Christmas and a Tuscan cook book) for £1 (the pair) and in another, a small table / plant stand (to put the Christmas tree on) for £4.

Massive haul and just a £10 note spent! :)

The other reason for going into town was to register at the doctors, the dentist and the vet.

Dentist was no trouble, took both registrations and made me an appointment. Their appointment card says "Thank you for choosing our practice for your dental needs", which is a whole lot better than the unsaid, but very apparent from the attitude of "we know we're your only choice, so we can be as crap as we like" that I certainly always got from the dentist in New Milton.

At the doctors the queue moved quickly, the receptionist was efficient and friendly (!?!) and I came away with registration forms for both of us. When I asked if I could bring in Richard's ID in for him, she said that I could. Was never allowed to do that in New Milton!

And the vets were even friendlier. Took Noah and Myles' details and even volunteered to call the Blue Cross themselves to get the rest of the cats' medical notes!

Everyone I came across was friendly, helpful and gave a shit. I should not be shell-shocked at this discovery, but it's a sad reflection on attitudes elsewhere that this difference too is so noticeable. 

Clyst is the name of a river, which accounts for the many of them.

Then this afternoon, I drove down to Clyst Saint Mary to collect a leather footstool I'd won on Ebay. It just fit in the car, by which I mean, once it was shoehorned in!

An inch bigger and it wouldn't have fit!

Yeah, I successfully got the car out of the garage and back in again, all without an adult present!

The drive down - I deliberately went via the scenic route - included some single-track roads with passing places, crossing lots of bits of river over impossibly cute, narrow stone bridges and some of the most awe-inspiring and breathtaking landscapes with colourful autumnal foliage.

What I didn't manage today: to phone any tradespeople, to find the printer.

But we have a phone and broadband - on schedule and that works!

Monday, 21 November 2016

Healing the rifts between mental health workers and psychiatric survivors

Just two examples will suffice. First, many survivors report their stories of abuse – both prior to, and subsequently within, the system – are not believed and seen as a ‘symptom’ of their mental illness. Second, the psychiatrisation of conditions like Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS) where organic and physical conditions become ‘all in the mind’. Here, whilst there is a complex inter-relationship between the mind and body, psychiatric reductionism has resulted in a catalogue of instances of maltreatment, neglect and abuse.

Most ME/CFS sufferers are female, many of whom have been referred to as ‘hysterical’ and ‘irrational’ by doctors and psychiatrists. The medical and psychiatric establishment has yet to come clean, admit to or apologise for these abuses.

Healing the rifts between mental health workers and psychiatric survivors

Via: Dr Speedy 

Thursday, 17 November 2016

The Exercise Intolerance in POTS, ME/CFS and Fibromyalgia Explained?

"... a significant subset of patients with exercise intolerance and heart abnormalities have simply slipped through the cracks. No diagnosis has been able to explain their low energy production (VO2 max) during exercise; they don’t have heart failure or arrhythmia or cystic fibrosis or known mitochondrial problems. Aside from telling them that they’re deconditioned or depressed, the medical profession hasn’t known what to do with these patients."

The Exercise Intolerance in POTS, ME/CFS and Fibromyalgia Explained?

Friday, 11 November 2016

The "Starvation" Disease? Metabolomics Meets Chronic Fatigue Syndrome Down Under

Armstrong speculated that an infection or autoimmune process may have triggered a sepsis-like condition which then lead to a state of chronic starvation. During sepsis immune cells rely entirely upon glycolysis to proliferate wildly. They are so energy hungry during this process that they can deplete the system of essential cofactors perhaps leading to a state of chronic cellular starvation.

The "Starvation" Disease? Metabolomics Meets Chronic Fatigue Syndrome Down Under

Wednesday, 9 November 2016

Claimants Rights Systematically Violated Says UN, Plus Support Group Under Attack

There may be an alternative universe in which it troubles the UK government to find itself accused by the United Nations of “systematic violations” of the rights of disabled people. Sadly, it isn’t this universe. A UN report published this week documented multiple violations of disabled claimants’ rights, including the way that they are portrayed as being lazy and a burden on taxpayers, the harm to health caused by unfair assessments, the cuts to legal aid, the imposition of the bedroom tax and the ending of the Independent Living Fund. The secretary of state for work and pensions, Damian Green, however, gave not a moment’s consideration to the detailed and carefully worded report. Instead, he dismissed it as “outdated”, “patronising” and “offensive”, insisting that it’s not “the amount of money poured into the system”, that counts but “the work and health outcomes for disabled people”. Likewise, the plot to force many, probably most, support group claimants to take part in work-related activities - even though they are in the support group precisely because the DWP doesn’t think they are able to undertake work-related activities – is enthusiastically supported by Green.

Claimants Rights Systematically Violated Says UN, Plus Support Group Under Attack
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