Monday, December 03, 2012

Sick and tired: the coalition’s war on the disabled and destitute

All this to cope with on top of already feeling terribly sicck and tired.... Sick and tired: the coalition’s war on the disabled and destitute
"I’m sick and tired of the cruelty and the lies. But being sick and tired is no reason not to keep fighting. Karen Sherlock, who died in June after a suspected heart attack, not long after having her benefits cut and being told to seek work by the DWP, was sick, and she was tired. She was just 44 years old, and severely disabled. In one of her last blog posts, she wrote: “We need to be passionate about standing up for our rights. If we can make enough noise, and get enough people to listen then we can overturn the inhumane changes this parasitic government have made.” There is a growing phalanx of people in this country refusing, like Karen Sherlock, like Christos Palmer and Lucy Aldridge, to accept this new, cruel reality. Disabled people and their allies are refusing to lie down meekly and accept their new status as scapegoats and social parasites. They are angry, and desperate, and prepared to make the ultimate sacrifice to protect their right, and others’ rights, to live with dignity. If the rest of us aren’t standing with them, we ought to be. Laurie Penny is an NS contributing editor"

Thursday, November 29, 2012

A fabulous description of the way we have to count energy, and the ways our senses over-react to all sorts of stimuli. Thank you. I’ve have not been quite as incapacitated but have been very very close and still have to count my 2spoons" very carefully. "If you’re a healthy person, how many things do you think you do per day? Your to-do list at work might have a half-dozen things on it, but I’m talking about more than that. Maybe you run a few errands after work and do some housework when you get home, and you think that brings it up to an even dozen? What if I told you you do a thousand things per day? I say that to demonstrate my perspective as someone with ME/CFS. The difference between what you can manage and what I can manage is enormous, and it’s likely that you and I see our possible energy expenditures in an entirely different way. Those thousand things include actions you never think of, things you’re hardly aware of – things that you would never think of as taking energy, because to you they take such a negligible amount. But they would would be enormous against my tiny supply. And in comparison, how many things would you guess I do? Well, I’d say I’m up to a hundred now, maybe more depending on the day, but at my sickest, I’ve gotten down to as few as a dozen......"

Sunday, July 01, 2012

Feeling Tired – Sluggish? Digestion may be the problem - Waupaca Naturals

Feeling Tired – Sluggish? Digestion may be the problem - Waupaca Naturals

The digestive system utilizes enzymes in the food for the digestive process. Enzyme activity in processed foods is nearly non-existent. There are several reasons for this (preservatives, high temperature cooking, etc.). The goal of food manufacturers is to reduce or eliminate enzyme activity, which increases shelf life. Our bodies are designed to use the food enzymes combined with the enzymes created in our pancreas to digest food. Without enzymes in the food, the pancreas overworks trying to produce enough enzymes to digest the food. Over time the pancreas begins to weaken and becomes ineffective. The body now does one of two things;

  1. The stomach will be filled with extra acid and the food will sit in the stomach three or four times longer than normal. If this happens you may feel uncomfortable several hours after you eat and may experience heartburn.
  2. The food will go right through you. In this case you will often feel the need to excuse yourself almost before your finished eating. If you are lucky enough to have your food digested after this you will get some nutritional value from your meal, but you will feel fatigued during the process.

An even worse case is where your food only partially digests. In this case the partially digested fats, sugars, and carbohydrates enter the blood stream causing all sorts of problems. The partially digested proteins cause your red blood cells to become sticky. The sticky red blood cells clump together

Protozoal Infection

Protozoal Infection v interesting...could this be the cause of my sticky red blood cells?

Friday, June 01, 2012

Research suggests that CFS is an autoimmune disease

Benefit from B-lymphocyte depletion using the anti-... [PLoS One. 2011] - PubMed - NCBI CONCLUSION: The delayed responses starting from 2-7 months after Rituximab treatment, in spite of rapid B-cell depletion, suggests that CFS is an autoimmune disease and may be consistent with the gradual elimination of autoantibodies preceding clinical responses. The present findings will impact future research efforts in CFS.

Friday, May 25, 2012

damning report, Ignorance, injustice and neglect about NHS specialist services for people with M.E

Time for Action on damning report Our damning report, Ignorance, injustice and neglect about NHS specialist services for people with M.E. based on the results of Freedom of Information Act requests to all Primary Care Trusts (PCTs) in England, Health Boards in Scotland and Wales and Health and Social Care Trusts in Northern Ireland is now available to download in full via the above link or as an Executive summary. The responses from your local PCT, board or care trust to our key questions are on pages 27 to 29 of the report. An overview of the results throughout the UK and our conclusion are on pages 16 to 26.

Saturday, May 19, 2012

Functional bowel symptoms, fibromyalgi... [Scand J Gastroenterol. 2012] - PubMed - NCBI

Functional bowel symptoms, fibromyalgi... [Scand J Gastroenterol. 2012] - PubMed - NCBI


Abstract Objective. Patients with perceived food hypersensitivity typically present with multiple health complaints. We aimed to assess the severity of their intestinal and extra-intestinal symptoms. Materials and methods. In a prospective study, 84 patients referred to our outpatient clinic for investigation of perceived food hypersensitivity were enrolled consecutively. Irritable bowel syndrome (IBS) was diagnosed according to the Rome III criteria. Severity and impact of bowel symptoms, fatigue and musculoskeletal pain were evaluated by using the following questionnaires: The IBS Severity Scoring System (IBS-SSS), the Fatigue Impact Scale (FIS), the FibroFatigue Scale (FFS), and visual analogue scales (VAS) for scoring of musculoskeletal pain. Results. All but one patient were diagnosed with IBS, 58% with severe symptoms. Extra-intestinal symptoms suggestive of chronic fatigue and fibromyalgia were demonstrated in 85% and 71%, respectively. Neither IgE-mediated food allergy nor organic pathology could explain the patients' symptoms. Nevertheless, malabsorption of fat was demonstrated in 10 of 38 subjects. Conclusions. Perceived food hypersensitivity may be associated with severe, debilitating illness. The comorbid triad of IBS, chronic fatigue, and musculoskeletal pain is striking and may point to a common underlying cause.

Wednesday, March 28, 2012

THE FULL FACTS • A guide to ESA, ATOS claim form and medical examination, assessments

THE FULL FACTS • Index page

A guide to ESA, ATOS claim form and medical examination, assessments

Ex-Atos HCP exposes WCA’s bias against the sick « downwithallthat

Ex-Atos HCP exposes WCA’s bias against the sick « downwithallthat

This bias which initially grabbed my attention through scrutinising my own and others’ WCA reports, expanded into a pattern permeating these other instruments/literature. The form it takes, that of deliberately undermining the claims a person makes about how their illness/disability affects their capacity to work, is to the discredit of not only Atos, but also the DWP and the government.
It has been very gratifying, then, to come across this account by one of Atos’ ex Healthcare Professionals, which bears out my own, and others’, observations that the process underlying the WCA is a ‘sham’.
“I worked for Atos as a ‘disability analyst’ thinking I would be helping vulnerable people to access their benefits,” she said.
“I soon discovered that nothing could be further from the truth. The rules laid down by the bosses are designed to catch people out.”
Jean worked for Atos Healthcare in Scotland, but found she was unable to continue in a role which went against her professional, and personal, ethics.
“The job was making me sick,” she said. “It’s against my principles to treat people with long term illnesses in such a disgusting way, so I had to give it up.
“People go into those interviews and talk openly to you because you are a nurse and they trust you.
“Then your skills are used against them, to take away their benefits and destroy their lives.
“I can’t be a part of that.”
Its to be hoped that, similarly to the A4e scandal, more and more Atos Healthcare personnel will have the courage to tell the truth about this shameful process.


Crutch Collective « Wessex Solidarity
When you first receive the results of your Atos W.C.A and it is a fail, the first thing that many do, as they are panicked and desperate, as they have had their money stopped, is to panic and phone the Job Centre Plus and ask about signing on for Jobseekers Allowance, which is what they want you to do, but there is an alternative and that is by asking for a Reconsideration.
How to request reconsideration

Thursday, March 22, 2012

CND: Fibromyalgia Pain Isn't All In Patient's Heads, New Brain Study Finds

CND: Fibromyalgia Pain Isn't All In Patient's Heads, New Brain Study Finds

"While the debate has raged, neuroscientists have begun to use brain scan technology to identify the areas of the normal human brain that become most active during pain. A few studies have even assessed the blood flow in those areas in fibromyalgia patients during baseline brain scans. The new study is the first to use both high-speed scanning and a painful stimulus.

In the study, fibromyalgia patients and healthy control subjects had their brains scanned for more than 10 minutes while a small, piston-controlled device applied precisely calibrated, rapidly pulsing pressure to the base of their left thumbnail. The pressures were varied over time, using painful and non-painful levels that had been set for each patient prior to the scan.

The study's design gave two opportunities to compare patients and controls: the pressure levels at which the pain rating given by patients and control subjects was the same, and the rating that the two different types of participants gave when the same level of pressure was applied.

The researchers found that it only took a mild pressure to produce self-reported feelings of pain in the fibromyalgia patients, while the control subjects tolerated the same pressure with little pain.

"In the patients, that same mild pressure also produced measurable brain responses in areas that process the sensation of pain," says Clauw. "But the same kind of brain responses weren't seen in control subjects until the pressure on their thumb was more than doubled."

Though brain activity increased in many of the same areas in both patients and control subjects, there were striking differences too. Patients feeling pain from mild pressure had increased activity in 12 areas of their brains, while the control subjects feeling the same pressure had activation in only two areas. When the pressure on the control subjects' thumbs was increased, so did their pain rating and the number of brain areas activated. But only eight of the areas were the same as those in patients' brains.

In all, the fibromyalgia patients' brains had both some areas that were activated in them but not in controls, and some areas that stayed "quiet" in them but became active in the brains of controls feeling the same level of pain. This response suggests that patients have enhanced response to pain in some brain regions, and a diminished response in others, Clauw says.

The study was supported in part by the National Fibromyalgia Research Association, the U.S. Army and the NIH. In addition to Clauw and Gracely, the research team included Frank Petzke, M.D.; and Julie M. Wolf, BA"

Summary of original article

Arthritis & Rheumatism

Volume 46, Issue 5, pages 1333–1343, May 2002

Functional magnetic resonance imaging evidence of augmented pain processing in fibromyalgia

  1. Richard H. Gracely1,
  2. Frank Petzke2,
  3. Julie M. Wolf3,
  4. Daniel J. Clauw2,*
Article first published online: 8 MAY 2002
DOI: 10.1002/art.10225

Tuesday, March 06, 2012

Suicide training in Job Centres? Cancer patients scrubbing floors? Welcome to Cameron¿s Brave New World | Mail Online

Suicide training in Job Centres? Cancer patients scrubbing floors? Welcome to Cameron¿s Brave New World | Mail Online "This may not affect you. Perhaps your parents, or yourself even, have a sufficient financial cushion not to worry about that. What an enviable position to be in.

But what about those less fortunate?

I believe - and I’ve 47 years of a colourful life to base this judgement on - that the UK is comprised of essentially decent people. Citizens who care enough to see beyond their own selfish existence.

The people I know don’t want to be - and neither are they - the type of people who turn their backs when the going gets tough. They actually seek a more compassionate life on earth where we are prepared to support and contribute to each others lives.

In is unconscionable that these disability reforms have been allowed to happen. To be fair, we all knew it was a Conservative agenda, but a Liberal one as well? Goodness how Nick Clegg can ever recover from this I do not know. My imagination is not that good.

So the Welfare Reform Bill, after decades in the making, has finally come to pass. Oh, how proud are we as a nation? We did it. Gave those sick and crippled unfortunates a good old kicking. Let’s give ourselves a collective pat on the back for allowing this to proceed. Makes you proud to be British, doesn't it?"

Thursday, March 01, 2012

Latest from the doc

A bit late posting but saw GP last Friday re her saying that I do not have fibromyalgia or CFS/ME ...think she was expecting me to challenge her as she said that she didnt mean it to sound that way and that both are in my notes but as depression and suicide attempts with pills and alcohol preceded fibro cfs the former are my main diagnoses...hmmmmmm

Newswire Article: GP leader calls upon Government to withdraw the Health and Social Care Bill and commence dialogue on an alternative 01/03/2012

Newswire Article: GP leader calls upon Government to withdraw the Health and Social Care Bill and commence dialogue on an alternative 01/03/2012 The Chairman of the BMA’s GPs Committee has today (Thursday 1 March 2012) written to all GPs in England1 setting out the Committee’s opposition to the Health and Social Care Bill, amid fears about the wide-ranging impact the Government’s reforms will have on GPs’ working practices and their relationship with patients.

Dr Laurence Buckman warns GPs that “over time, it has become clear that this is the most top-down reorganisation the NHS has seen since its inception” and that, despite what the Government says, “the ability for ordinary GPs to change things will diminish” under the Health and Social Care Bill.

The concerns set out by Dr Buckman in the letter include:

Ordinary GPs within Clinical Commissioning Groups (CCGs) not having the ability to improve the health service - a key plank of the original proposals - as CCGs are forced to develop into ever larger and more remote units in order to be approved by the NHS Commissioning Board
Pressure to adhere to an unrealistic timetable for approval, known as “authorisation”, forcing GPs to make decisions about the running of their local health service which they might not make if they had more time
CCGs becoming the vehicles for turning the NHS into a competitive marketplace where services have to compete for their business and where patient care becomes increasingly fragmented
The potential for commissioning to be controlled not by clinicians but by the private organisations, operating outside of the NHS, which could end up not only running the ‘back office functions’ for CCGs but also disempowering them2
Proposals for a “quality reward” - an incentive for CCGs if they are deemed to have commissioned “well” - which could cause irreparable damage to the relationship GPs have with their patients
GPs being blamed by their patients for having to close services for financial reasons

Dr Buckman has urged the Government “to listen and act on the concerns of GPs in the interests of the future of the NHS and what is best for patients – there is a sensible alternative to proceeding with this Bill.”

Wednesday, February 22, 2012

Save our NHS

Save our NHS
Save our NHS

Save the Date - Save our NHS - 7 March 2012

Join the mass day of action to save our NHS - Wednesday, 7 March from 1pm, Houses of Parliament, London.

Find out the latest transport details and coordinators from Unite's regions.


Get the leaflet here

If you can’t attend the rally you can send a message of opposition to the Bill by texting the word NHS and your message to 86888. Click here to download a leaflet and tell us why you support the NHS.

Help scrap the bill - sign Dr Chand's e-petition: take a minute to save our NHS -

Our NHS is a national treasure that we should all be proud of. It has cared for generations of working people. It places fairness at the heart of our society.

You need the NHS – now it needs you

Friday, February 17, 2012

Tesco latest PR re workfare

(1) How can you justify...

H Peter,

JobCentre Plus yesterday wrongly advertised a short work experience placement at Tesco as a permanent, unpaid job. This has resulted in widespread misunderstanding of our position. We are happy to re-state the facts:

- Tesco has been working in partnership with JobCentre Plus for many months to offer work experience opportunities lasting up to four weeks for young unemployed people who are struggling to find jobs. No one is under any obligation to take part in the scheme, and JobCentre Plus has assured us that all of those who have come to Tesco have done so as volunteers. Tesco would not take part in any mandatory scheme. This is all about helping young people who want to find a job.

- We would never offer longer term work on an unpaid basis. The Department for Work and Pensions has acknowledged that the advertisement was an error on the part of JobCentre Plus. Work experience at Tesco should, wherever possible, be a pathway to a paid job with Tesco. That has already been the case for 300 work experience participants with us so far and we hope it will be for many more people.

- We understand the concern that those who stay in the scheme longer than a week risk losing their benefits if they drop out before the end of their placement. We have suggested to DWP that, to avoid any misunderstanding about the voluntary nature of the scheme, this threat of losing benefit should be removed.

We remain committed to offering long-term, sustainable and rewarding paths into employment for thousands of young people.

Peter – Customer Care

7 minutes ago · Like

Several posters on the comment thread beneath the story about disabled people being required to do unpaid work have asked for more details of the Department for Work and Pensions' plans. So that readers can see for themselves what the DWP is proposing, we've been working this afternoon on getting the documents online – with some annotation from reporter Shiv Malik – and these will be on the website imminently.​global/blog/2012/feb/17/​newsdesk-live-blog-february​-17-tuition-fees?newsfeed=​true

Monday, February 06, 2012

FURIOUS! What we're all talking about. Mr. Liddle. | Niamh, me, and M.E

FURIOUS! What we're all talking about. Mr. Liddle. | Niamh, me, and M.E

The gorilla in the room.

I know I said I was going to have a moan about the changes to DLA, and I want to, I just don't have the energy. Trust me it has all got worse in my eyes since yesterday as I've been doing some calculations about what we have coming in, and well basically we don't. So yeah, headless chicken. Anyway will moan about that tomorrow, or the next day, or when I stop worrying about it all long enough to get enough sleep to be able to function well enough to write something that makes sense! Unlike that!

On that note, this entry is something that I saw someone reading on youtube, found it very true and had to find the source and post it on here. I am unsure whether or not I found the original source so I have pasted the link to the blog I stole it from at the end of todays entry.

"Acquiring a disability is a bit like getting home to find there's a gorilla in your house. You contact the approved and official channels to get rid of infestations of wild animals (in this case, the NHS) and they umm and aah and suck air in through their teeth before saying something roughly equivalent to "what you've got 'ere, mate, is a gorilla, and there ain't really a lot what we can do about them, see..." before sending you back home to the gorilla's waiting arms.

The gorilla in your house will cause problems in every part of your life. Your spouse may decide that (s)he can't deal with the gorilla, and leave. Your boss may get upset that you've brought the gorilla to work with you and it's disrupting your colleagues, who don't know how to deal with gorillas. You're arriving for work wearing a suit the gorilla has slept on. Some days you don't turn up at all because at the last minute, the gorilla has decided to barricade you into the bathroom or sit on you so you can't get out of bed. Your friends will get cheesed off because when you see them - which isn't often, because they don't want to come to your house for fear of the gorilla and the gorilla won't always let you out - your only topic of conversation is this darn gorilla and the devastation it is causing.

There are three major approaches to the gorilla in your house.

One is to ignore it and hope it goes away. This is unlikely to work. A 300-lb gorilla will sleep where he likes, and if that's on top of you, it will have an effect on you.

Another is to try and force the gorilla out, wrestling constantly with it, spending all your time fighting it. This is often a losing battle. Some choose to give all their money to people who will come and wave crystals at the gorilla, from a safe distance of course. This also tends to be a losing battle. However, every so often, one in a hundred gorillas will get bored and wander off. The crystal-wavers and gorilla-wrestlers will claim victory, and tell the media that it's a massive breakthrough in gorilla-control, and that the 99 other gorilla-wrestlers just aren't doing it right due to sloppy thinking or lack of commitment. The 99 other gorilla-wrestlers won't have the time or energy to argue.

I have known people spend the best years of their life and tens of thousands of pounds trying to force their gorillas to go away. The tragedy is that even if it does wander off for a while, they won't get their pre-gorilla lives back. They'll be older, skint, exhausted, and constantly afraid that the gorilla may well come back.

The third way to deal with the gorilla in your house is to accept it, tame it, and make it part of your life. Figure out a way to calm your gorilla down. Teach it how to sit still until you are able to take it places with you without it making a scene. Find out how to equip your home with gorilla-friendly furnishings and appliances. Negotiate with your boss about ways to accommodate, or even make use of, your gorilla. Meet other people who live with gorillas and enjoy having something in common, and share gorilla-taming tips.

People get really upset about this and throw around accusations of "giving up" and "not even trying". They even suggest that you enjoy having a gorilla around because of the attention it gets you (while ignoring the massive pile of steaming gorilla-turds in your bedroom every morning and night, not to mention your weekly bill for bananas). The best way to deal with these people is to smile and remind yourself that one day, they too will have a gorilla in their house. "

So true.

Faker? | Niamh, me, and M.E

Faker? | Niamh, me, and M.E great read....well done

Tuesday, January 31, 2012

M.E. Our priority is reliable independent research | This is Bristol

Our priority is reliable independent research | This is Bristol

Our priority is reliable independent research


Monday, January 30, 2012

Bristol Evening Post

STARTING this year people who are affected by the illness ME (Myalgic Encephalomyelitis) are invited to become members of an ME Community Trust local support group corresponding to their parliamentary constituency.

For the first time, instead of relying exclusively on volunteers, we are inviting applications for paid positions for administrators, to work remotely from home, for a flexible 16-20 hours (for example, disability claimants who are permitted to earn up to £95 a week, or unemployed people, £120 a week, while still claiming benefit or seeking work) to be paid for, on a non profit basis, from membership subscriptions.

Unlike most organisations, we do not take the view that ME is the same as Chronic Fatigue Syndrome (CFS) but that it is much more than mere tiredness, certainly not laziness, malingering, or some kind of psychological weakness. It is a genuine, seriously disabling illness, with a physiological origin.

We do not accept that conclusions drawn from CFS studies can be applied to people with ME.

We do not, therefore, recommend behavioural techniques or graded exercise, nor do we suggest any other treatment, whether defined as alternative, complementary, radical, or any supplements.

We only advise good primary care from a sympathetic GP for symptom relief and will help members find such a doctor if they have been unable, or feel neglected.

Our priority is reliable, independent, research, designed to seek a universally agreed diagnostic test – such as a blood test or scan – with the aim of suggesting effective treatment in the hope of a cure, or significant recovery, which would be funded by the Trust. In the meantime, members will be given support with benefits claims, practical help with shopping, cleaning and gardening, provided with the latest news and information and given the opportunity to make new friends and contact others in the same boat, by Skype and instant messaging, when they wish and turn it off when they are not able.

Members will pay £2 a week by direct debit, subject to a minimum membership of 100 per constituency area.

This is to cover the salary of the administrator, funding for research and to meet the overheads required to produce a newsletter and cover administrative costs.

We shall still depend on volunteers to keep the subscription at this affordable level.

Exemptions will apply to those for whom cost would bring hardship. Provision will be made for ME sufferers without internet connection to receive information by post or be visited by members who are more able if they wish.

Applications should be made by e-mail, to

In the subject line Local Support Group, name of your constituency or postcode and in the body of the e-mail your contact details


In the subject line Local Support Group, name of your constituency or postcode and in the body of the e-mail, your CV and contact details

Or you may apply by post to Dr John H Greensmith at the address below.

Dr John H Greensmith

ME Community


Saturday, January 28, 2012

Tuesday, January 24, 2012


Looking back it seems that my GP mentioned that my pains seemed like fibromyalgia late 2003 early 2004 ....must try to find out when she first prescribed me nortryptaline for sleep the accompanying disorder, she consulted rheumatologist at the local hospital about that so I would hope it his somewhere in my notes....reason for my she denied having diagnosed me with either fibromyalgis or ME...floored and baffled...

Monday, January 09, 2012

Report on the proposed changes to Disability Living Allowanc

A Report on the proposed changes to Disability Living Allowanc