The Cupboard is Bare....? (Welfare Reform)

I wanted to bring your attention to a post recently made by Matthew on his blog, Indigo Jo Blogs, regarding the reforms to Disability Living Allowance which are about to be pushed through by the government. His feelings on the subject very much mirror my own.

The government state that there is 'no alternative' to making cuts to DLA ... yet when you look below the surface of their proposed reform, the problems are immediately evident - both (more obviously) to the quality of life for people affected by this reform, and (less obviously) for the future financial security of the country. Cutting benefits for disabled and chronically sick people will inevitably cause costs elsewhere to shoot up, potentially costing the country more than the cuts will 'save'. This is ignoring the fact that the disability benefits are the least affected by fraud, (According to the DWP's own statistics, only 0.5% of DLA claims are in fact fraudulent!!!!) and therefore are the least needing of reform in the first place!!!

Matthew says it all so much better than me in my current massively fogged state, so I'd refer you to his post ... excerpt below.

Excerpt from The Mail, Gerada, & The Alternative to DLA My main reason for writing this, though, is to explain why disability benefits are not something we can just do away with by saying “the cupboard is bare” or “we can’t afford it” ... next time you hear a Tory (or Lib Dem) politician tell you “there is no alternative”, remember that there in fact is — wholesale re-institutionalisation. Only, the buildings have been either demolished or sold off, and building new ones will cost an awful lot of money. Caring for people with disabilities or the chronically ill in nursing homes or long-stay hospitals costs more than supporting them to live at home, and is less satisfactory for them as it imposes an institutional lifestyle, even if it does not lead to outright abuse (which it sometimes does). There is, in fact, no way to reduce the disability budget without imposing a lot of extra bureaucracy, a huge institutional care burden, or a lot of suffering (and manifestations such as public beggary) which would prove politically intolerable.

You may also want to follow the #SpartacusReport hashtag feed on Twitter, regarding the report just released by a group of disabled people, based on freedom of information requests, showing that the governments claims that the disabled community was supportive of their welfare reforms, was actually a misrepresentation of the truth. You can read an easy read copy of the Spartacus Report, officially known as the Responsible Reform Report: here.

I'm so thankful to, and proud of, the people who produced this report, and who have done such an amazing job of getting it into the public eye! Two of the main helpers have actually been hospitalised by the effort this has cost them, and several are now extremely ill. It was a marathon and amazing effort by a group of very sick and disabled people, who are amazing activists for our cause!!! I've embedded a video below, posted on Diary of a Benefit Scrounger, asking for our support in keeping the Spartacus report in the public eye, because so many of the team who put this report together have become too ill to continue working on it at this time.




Today I heard that the Lords voted, yesterday, to overturn the one-year time limit to contributory Employment and Support Allowance proposed by the government - this is a major victory for all disabled people in the UK!! Please check out today's post on Diary of a Benefit Scrounger for the latest updates to the Spartacus Report Cause, and info on what you can do to help. :)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

The Cupboard is Bare....? (Welfare Reform)

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Hope and Happiness Within the Storm....?

I've shared videos by Daisy before, which are always really inspiring and moving. She really knows how to straight talk, and how to talk from the heart in a way that can really reach people and show them the reality of the lives we lead, normally hidden away from view.

This one had quite a significant affect on me. I've really been struggling to cope emotionally recently. It's not really so much the disease that's been getting me down - though of course that's always a factor. It's more everything surrounding it. All the battles over healthcare, benefits, rights. All the prejudice, ignorance and hatred towards us. The way the system just doesn't 'fit' to our needs, and how much sicker that can end up making us. (Example, no GP home visits despite being bedbound) Hope can sometimes be extremely elusive when you're stuck in the middle of all that, at the same time as dealing with the daily pain of being seriously ill, and everything that brings.

Daisy, I'm sure, has as many bad days as me. I'm sure she has times where she just can't find the will to fight for hope. But like I have again and again during the course of my illness, she eventually fights her way back. In this video, created for the 'Britain in a Day' BBC project, she talks about finding a way to find happiness & beauty inside of this horrible, difficult bubble we live in. Coming from someone so young, (17) that almost makes an even stronger impact than it would from an adult. And she's right ... it really does come down to finding that 'do or die' attitude, to working our butts off to find what small happinesses and controls that we possibly can in our daily lives. And to not let all our possible futures cloud the present too much. I need to re-learn that ... and I sort of feel like this (and a couple of other things that have happened lately - see my last post, 'Can we Transform Pain & Despair into Beauty') are maybe a turning point to drag myself back up to a place of coping.

There can be beauty even in massive destruction!

So, here's Daisy's video. Share on, wherever and with whoever you can!!!

But living a life of regret would have kept me looking backwards, rather than forwards. Hope is forward leaning. It’s the ripple of energy that trusts there are resources enough to live into the future. I had to focus on what I could do, not what I could not. ~ Julie Neraas ~

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Hope and Happiness Within the Storm....?

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Can we Transform Pain and Despair into Beauty?

A few nights ago, my carer and I watched the movie 'Another Earth'. There's a scene in the movie that's stayed with me since. One of the main characters is telling a story to the other main character, who is in a great deal of pain in more ways than just the physical. (clip embedded below but I'll give a text version for those who can't view the video.)

The story is of a cosmonaut who is all alone in his space capsule, looking down at the curvature of the Earth, and is lost in that beautiful moment. But then a tap, tap, tap starts somewhere inside the capsule. He tries to stop it but cannot. Days go by, like torture, and he now knows that this repetitive sound would break him. Would drive him crazy before he will reach his destination.

She begins to tap on the table with a spoon, comparing her tapping to that inside the cosmonaut's capsule. The cosmonaut realised that his only chance is to fall in love with the sound. To, rather than let the repetitive tap be annoying, instead perceive it as music. So he shuts his eyes, goes into his imagination. Then he opens them, and he doesn't hear tapping anymore. He hears music! And throughout the rest of his journey, he floats through space in total peace and bliss!




I was watching this and wondering how much it could be applied to the things that pull us down, causing us pain, illness, & other struggles. Is it possible that we could make music and beauty from our pain? Could we, somehow, turn a switch in our brains that helps us to see things a different way?? Not a healing, because who can stop a storm in it's path? (excepting God) More ... to still be living with all the same pain we were only moments before - but to see it and feel it.... experience it differently, somehow?

I don't yet know the answer ... but I suspect that I would rather like to find out! I haven't been in a good place physically or emotionally recently. I want to climb out of it but it just seems impossible right now. I wish I could find a way to make it feel.... just not quite this bad, you know? To find comfort and rest within the turmoil of a storm of pain. To give myself an eye in that storm to wait it out for however long it lasts? Right now I feel like I'm living in the middle of a huge despair tornado, so I really would love for this to be possible! I do believe the brain, especially when combined with hope, is an amazing thing, capable of so much more than we know. Maybe it is possible to find a way to change our perception or our perspective! After all ... if you're on the inside of the storm pictured above, it would seem ugly and violent in the extreme, not to mention completely unforgiving. From above, though, in space, it's breathtakingly beautiful!!!

Oooh! Didn't I just get all meta-physical on you!! ;)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Can we Transform Pain and Despair into Beauty?

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Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

This talk on the Chronic Fatigue Syndrome Team at Stanfords research, findings, & position on CFS was given a while ago now, back in March, but I've personally only just seen it, and am guessing there are others too who managed to miss it at the time it was first circulated on Youtube, so I wanted to share it here today.

It's so encouraging to see some real, positive research happening into CFS which doesn't begin with the premise that it is caused by psychological factors, and I found this fascinating viewing. Dr Montoya is very genuine and appears to sympathise very much with his patients, both for the physical hardships they are suffering, and also for the psychological harm they are undergoing because the majority of doctors (and the general public) dismiss our illness as 'not real', and the patients as 'malingerers' etc.

I particularly liked that he addressed the PACE trial so honestly, stating that it absolutely did not prove that CFS is psychological, or that psychological treatments can cure it.

Stanford have now set up a website where they will be posting relevant information on CFS as they progress in their research. You can view this site at http://chronicfatigue.stanford.edu/

This presentation is an hour and 15 mins long, but I highly recommend that you watch it if you're a CFS or ME patient or are simply interested in this area of research - it's worth the time!

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

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'Voices From The Shadows' Trailer

One of the best books I've read, in terms of really expressing what life is like for people with severe ME, is Lost Voices From a Hidden Illness, which tells the stories of many different people with ME, & their friends, families, and carers. It's beautifully made, looking very much like a coffee table book, illustrated with images of those telling the stories - each picture telling as much of a story as the actual text. It was produced in conjunction with Invest in ME, one of the leading UK charities for ME. If you have ME, or care for someone who has, I highly recommend investing in a copy of this book and passing it around to friends and family to help them understand more about what you're going through!

I found out this week that coming soon is a 'film sequel' to Lost Voices - Voices From The Shadows. I wanted to share the trailer with you here. I'm quite excited about this film, and have high hopes that they will yet again produce a powerful tool for ME advocacy and awareness!

Voices from the Shadows Trailer from Josh on Vimeo.

Isophia.com describes the film in the following way :

‘Voices from the Shadows’ (is) a documentary bearing witness to the devastating consequences of psychiatric prejudice and medical ignorance about one of the most prevalent illness of the 21st Century.

Hidden away in darkened silent rooms for years, even decades, men, women and children are suffering a vicious injustice. Although shockingly ill, many are disbelieved, blamed and suffer medical neglect and even abuse by professionals. Deception and obfuscation have been used to deny the horror of their plight.

The isolation imposed by this severe illness means that the daily reality of these sufferers lives remains invisible. They are too ill to make their voices heard, and few professionals are willing to risk damaging their careers by speaking out to protect them.

Biomedical research has been stifled, so prejudice and misinformation have become widespread. Irrevocable harm is still being caused by inappropriate ‘treatment’. At last international research is highlighting this travesty, but in the UK it could be many, many years before change occurs. Meanwhile, lives are being destroyed and children and young people are particularly vulnerable.

This is a profoundly moving, poignant and disquieting film by two patient advocates/carers. It shows the love, enduring courage and determination of those who bravely strive to be heard as they fight for health and respect.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

'Voices From The Shadows' Trailer

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May 12th: ME/CFS Awareness Day

Post written by Laurel, & re-posted with permission!

May 12th is International ME/CFS Awareness Day. Unless you have or know someone with ME/CFS, you probably wouldn't know that. And even if you did know, you probably won't read about it in any newspaper, nor hear about it on any media outlet. Like many ME/CFS patients themselves, this day tends to go by unmentioned, unnoticed, unheard.

So, in an effort to do my small part in raising awareness about this illness, here are just a few basic facts about ME/CFS:



1. Chronic Fatigue Syndrome (CFS) is a serious disease with a ridiculous name. CFS is also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E). It is often abbreviated ME/CFS.


2. ME/CFS is a complex, multi-systemic illness, affecting the immune, endocrine, cardiovascular, autonomic, and central nervous systems. It is classified by the World Health Organization (WHO) as a neurological disease.


3. In order to be diagnosed with ME/CFS, you must present with: extreme, incapacitating exhaustion that is not alleviated by rest and reduces your activity level by at least 50%, as well as at least four of the following symptoms: post exertional malaise (a worsening of symptoms after even minor exertion) lasting more than 24 hours, muscle and joint pain, swollen lymph nodes, sore throat, low grade fevers, headaches, unrefreshing sleep, and memory loss or difficulty concentrating. These symptoms must be present for at least 6 months or longer. ME/CFS patients often also suffer from neurological problems, sensory overload, orthostatic intolerance, exercise intolerance, flu-like symptoms, shortness of breath, chest pain, and other symptoms.


4. According to the CDC, ME/CFS can be as or more debilitating than multiple sclerosis, lupus, COPD, heart failure, late stage AIDS, and end stage renal failure.

Dr. Nancy Klimas, an immunologist who splits her time between ME/CFS and HIV/AIDS patients, was recently quoted in The New York Times as saying:

"I can tell you, if I had to choose between the two illnesses (in 2009) I would rather have H.I.V."

5. ME/CFS afflicts both genders of all classes and all ages, including young children. Approximately 1 to 4 million Americans have ME/CFS. That's more than breast cancer, AIDS, or lung cancer combined.

Additionally, at least 17 million people suffer from ME/CFS world-wide.


6. It has been estimated that about 25% of ME/CFS patients are fully disabled, and many of those are homebound or completely bedridden.


7. ME/CFS often has a viral and sudden onset. Many viruses have been linked to CFS, including EBV (mononucleosis), CMV and HHV-6. Bacterial infections have also been associated with ME/CFS, including mycoplasma and Lyme Disease.


8. In October of 2009, Science Magazine published a study showing a link between a newly discovered human retrovirus (XMRV) and ME/CFS. This study was conducted by the Whittemore Peterson Institute in collaboration with the National Cancer Institute and the Cleveland Clinic.


9. There are over 5,000 published studies showing a clear, biophysical pathogenesis in ME/CFS. Some abnormalities found in ME/CFS include: low natural killer cell count and activity, activated T cells, increased levels of cytokines, abnormalities in brain metabolism, mitochondrial damage, orthostatic intolerance, low blood volume, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, left ventricular dysfunction in the heart, and delayed VO2 max (maximal oxygen utilization) following exercise or exertion.


10. ME/CFS is thought to cost the U.S. economy about $25 billion a year, and perhaps more. The average cost per family of a ME/CFS patient is approximately $25,000 per year (including unemployment).


11. Despite its prevalence and seriousness, ME/CFS is still one of the least funded of all illnesses in the United States (in the bottom 12). More money is spent each year studying hay fever than ME/CFS.


12. Currently, there are no FDA approved treatments for ME/CFS, and there is no known cure.



Sources:

Phoenix Rising: About ME/CFS

Whittemore Peterson Institute

The CFIDS Association of America




Some things you can do to help:



1. Help spread the word that ME/CFS is a serious and multi-systemic disease. If someone has false misconceptions about the illness, speak up and correct them.


2. Don't call CFS "chronic fatigue." CFS is a complex illness affecting many different organ systems; it is not a single symptom. Referring to it merely as "chronic fatigue" (rather than CFS or ME/CFS) is not only incorrect, it can actually feel disrespectful.


3. If you know someone with CFS, let them know you care. Drop them a line from time to time (without expecting a response). Listen to what they have to say and ask if there's anything you can do to help.


4. Become educated and involved. Read up on ME/CFS from legitimate sources and stay informed. Join advocacy groups such as the ones linked on this page, sign petitions, watch online webinars, and/or write to Congress to request more funding and awareness.


5. Take a moment to ask the Secretary of Health to implement the recommendations of the CFS Advisory Committee. The CFIDS Association makes this easy for you. The letter is already written, so that all you have to do is add your name and address. There is room for further comment should you choose to add any additional thoughts.


6. Wear a blue ribbon to show your support. If you are on Facebook or Twitter, consider putting one of these Twibbons on your profile picture to raise awareness.

ME/CFS 12th May Awareness Twibbon
Pandora Neuro-endocrine-immune centre Twibbon
XMRV & ME/CFS Twibbon


7. As noted above, ME/CFS is one of the least funded of all illnesses. If you can afford to, make a donation to one of the many ME/CFS charities, such as the

Whittemore Peterson Institute,
The CFIDS Association of America, or
PANDORA.

If you are unable to donate, you can instead write to your local senators or government representatives and ask that they allocate more funds toward ME/CFS research.


8. Below are a few informational videos about ME/CFS as well as XMRV. Take a look, listen and pass them on.



SolveCFS Video





XMRV Discovery





Sleepydust Video





For more information on ME/CFS please visit any of the organizations linked on this post, or in the 'Useful Links for ME Support & Info' section on the sidebar.

This post was written by Laurel on her blog Dreams at Stake, & was re-posted with permission, with many thanks to her!

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

May 12th: ME/CFS Awareness Day

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Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

I noticed today that there is a new article, and video, by The Wall Street Journal reporting on the Lyndonville New York cluster of CFS - one of around a dozen such clusters around the World. It's the best press I've seen in quite a while, and it was such a nice change from all the bad press that the PACE trial has given us, that I decided to post it here. :) I wish it would get picked up by the UK news channels, but I imagine I'll be disappointed there!!

The article, written by Amy Docker Marcus, is titled The Puzzle of Chronic Fatigue Syndrome and reports on Dr Bell's (the GP for the area) efforts to research the possible role XMRV may have played in the cluster in his town. He has been treating people affected by the outbreak since the mid 1980's, and this seems to be the closest they've come to finding out what happened to cause such a cluster. Many of his original patients are still very ill, in a lot of pain, & often severely disabled decades after their initial symptoms began.

Dr Bell has had many of his patients from Lyndonville tested for XMRV, a recently discovered retrovirus which could possibly be part of the cause of Myalgic Encephalomyelitis (ME) / CFS, and has found that a high percentage of those tested are indeed infected with the retrovirus. I can only imagine both the hope and fear this has caused amongst his patients. Hope that finally something will be done, that a treatment may be found, or even just a single, validated test for the illness. Fear that this new retrovirus research will be repressed, like other such projects have been in the past.

You know, it strikes me as insane that a disease known for occurring in these types of clusters would be painted as psychological. In what universe does that even make sense?? Essentially what the psycho-social rabble are saying is that these clusters are caused by some kind of mass hysteria. What a load of rubbish!! There are hundreds of people in some of these clusters - it's completely realistic that every single one of them is putting it on, or is in some way mentally ill. So many clusters, across the whole world, many of them beginning at around the same time - that's something that immediately and obviously says there's a good possibility of the cause being an 'infectious agent' - viral or environmental, to any right minded person. It's a tragedy that the issue has been either ignored or maligned by doctors, researchers, and the media ever since the 80's!

Here's a copy of the WSJ Video report. :)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Media Report on The Lyndonville CFS Cluster : The Wall Street Journal

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High Hopes for Feature Documentary 'What About ME?'

I still have high hopes for this feature documentary, which is currently in production, & plans to investigate Myalgic Encephalomyelitis, and all the politics, research, & intrigue around it - not to mention the terrible history of abuse M.E. patients have had to suffer over the years.

There will apparently be a chance for people to share their stories, soon - keep an eye on the What About ME website, or their Twitter feed.

Check out their latest teaser trailer now :

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

High Hopes for Feature Documentary 'What About ME?'

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Sweet Film Short "Validation" with Hugh Newman

Can't we all do with a little validation in our lives? ;) This short film left a really big smile on my face - so just for kicks, I'm sharing it with you too. Definitely worth 15 mins of your life!

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Sweet Film Short "Validation" with Hugh Newman

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