A Moment for Meso

I first heard about Mesothelioma when I was a child- my parents were talking about someone who had died of a cancer caused by asbestos, and how unfair it was. They explained to us that a long time ago it had been used as a building material, but that they had discovered that even a little exposure to the dust could be deadly so they had stopped using it. That was all I ever knew about it, so I was shocked when I learned recently that although they have known it was dangerous since the 1950s, it wasn’t actually banned until 1999 and it’s still the leading cause of work-related deaths in the UK

Mesothelioma is a cancer of the cells which cover organs, usually those of the lungs. It develops slowly and is often not discovered until the sufferer is already struggling to breathe. Although it can be up to 40 years from exposure time to the patient developing the disease, once diagnosed the average life expectancy is a mere 1 year. It’s incredibly painful and debilitating, but the early signs tend to be subtle and so often missed – weight loss, side pain, shortness of breath, fatigue and a persistent cough.

One of the great battles faced by Mesothelioma sufferers, much like those of ME, is the lack of information available for patients and doctors. Although most people are aware that asbestos is dangerous, very few realise that it was still used as a building material in the UK as late as the 90s. Then there’s the large number of professions exposed to it – from those serving in the armed forces to those washing construction crews’ clothing – most of whom never knew there was any danger at all.

The good news is that there are treatments available, and new research is being carried out all the time – the prognosis nowdays is better than it was even 10 years ago! However, many doctors are still unaware of the latest options, and patients often struggle with understanding the illness and what to do about it. That’s why, as ever, the spread of information is key – and that’s something we can all help with.

We can combat poor poor life expectancy simply by knowing what to look for. Usually the illness is diagnosed very late, but the earlier its caught, the better the chances of survival. You can find out more about the symptoms at www.mesothelioma.com/mesothelioma/symptoms. It’s also a good idea to check whether you or a loved one worked in one of the industries which used asbestos – a list can be found here:/www.mesothelioma.com/asbestos-exposure/occupations.

If you’ve been diagnosed then there’s a wealth of medical and legal help available at websites like www.mesothelioma.com (US) and www.mesothelioma.uk.com (UK) where you can find out about the latest treatment and research options. There are also support groups and helplines available. In the UK you can sign up for clinical trials through the NHS at www.nhs.uk/Conditions/mesothelioma/Pages/clinical-trial.aspx and help researchers improve treatments and quality of life for sufferers everywhere.

Lastly, if you’re thinking of carrying out some DIY or home renovations then find out first whether your home was constructed with asbestos, so you don’t accidentally put yourself and your family at risk.

Like ME, this was a disease I had vaguely heard of but never really knew about, but it’s something many people know all too intimately, and those sufferers need support too. I’m glad I took the time to learn a little more and to share that knowledge. Information empowers us – the more we know, the better we fight!


Sunday Summary (16/06/13)

For anyone following the “ME and You” fundraising in Norway, the research council approved meeting some of the costs of the Rituximab trial! This is fantastic news. You can read about that here: http://www.meyou.no/thank-you-maria-bergensavisen/ and sign a thank-you card to the doctor who has been heading the campaigning, Dr Maria Gjerpe, here: http://www.groupcard.com/c/zMGag9wWEjE

Learning to receive (Abigail Cashelle, Hidden Courage)

The Blue Ribbon
An ME awareness film being produced in America, based on the everyday experiences of real sufferers. The second link is to a kickstarter project for funding it.

Experts reflect on the FDA stakeholder meeting (Joel, Phoenix Rising)

Disability project makes music using invisible beams (BBC News)

A woman’s voice (Rachel Held Evans, Theoblogy)
On being yourself, not a representative of all women everywhere.

Petition to increase benefits by rate of inflation

Petition against the removal of legal aid

Petition to give people on Carer’s Allowance Working Tax Credits
Carer’s allowance is actually taxable income, but people receiving it aren’t eligible for tax credits…?

Petition to save social care in the UK

Saturday Summary 8/6/13

Exciting news! Let’s do it for ME/Invest in ME (see my plug here) have reached their goal of raising £100,000 for a biomedical research centre in the UK. Their next project is to see a Rituximab trial carried out here too, check out their blog post: http://blog.ldifme.org/2013/06/lets-fund-uk-rituximab-study-for-me.html.
This is great as it won’t be enough to have just the one trial in Norway – multiple Rituximab trials will be important to show whether the drug is a suitable treatment or not. “Independent substantiation” (several independent research results supporting the same conclusion) is generally required by law in order to license a drug for a new use.

PFAM: Call for Submissions – Getting the Attention you Need (Abigail Cashelle, Hidden Courage)
A call for submissions from any patients or friends/carers/family of patients, on the topic of “Getting the attention you need”. This is for the ‘Patients for a moment’ blog carnival, where a different person hosts each month, providing links to lots of articles on the subject. I’ll be taking part too!

DWP Plots Workfare for Part Time Workers(Johnny Void, the void)

The Ultimate Theft (Pam Field, Think Left)

U.S., British intelligence mining data from nine U.S. Internet companies in broad secret program (Barton Gellman & Laura Poitras, Washington Post)
It was strongly suspected, but still scary to have it confirmed.

Thirty things I want the church to know about Christian Feminism (Leigha Cann)

All God’s Children: Loving our LGBTQ friends as we love ourselves (Sean Palmer)

Petition to end gendercide in China

Cat cuddling panda toy

I’m watching… Yuyushiki
I’m reading… A Crown of Swords (Robert Jordan)
1 Samuel/2 Samuel
I’m coding… First iteration of a flash game!
I’m playing… Munchkin Quest

Saturday Summary

ME & You fundrasing – click to support (facebook link)
The ME research charity ME & You (website: http://www.meyou.no/this-is/ my plug: here ) are part of a competition to win about $17000, which would go directly towards research. To vote for them, click that link and select them in the poll. Voting closes today!

ME/CFS: I am what invisible illness looks like (Jess B, My Journey Thru M.E.)
The many ways in which ME is an invisible illness.

Inflation, deflation and QE (Frances Coppola, Coppola Comment)
A detailed post on Quantitative Easing, and whether it’s working or not. Coppola is wanting to generate some debate on the theory and practicality of QE, so check this out if you want in: http://qedebate.blogspot.co.uk/p/welcome.html

Listening Well as a Person of Privilege (Christena Cleveland)
An insightful and challenging series on how people of privilege can show solidarity with the oppressed.

In which words like “real” and “true” mean things (Sarah Bessey)
On the implications that language has.

Two win sickness benefits test legal challenge (BBC News)
Judges rules that the Work Capability Assessments are unfairly discriminatory against claimants with mental health issues (hurrah!)

Christians: It’s NOT a sin to change your beliefs (Stephan Mattson)
On how theology should be more a natural process of increasing in understanding, and not a rigid adherence to the first thing we ever believed was true.

Petitions to release Karina Hansen from Danish mental hospital
Karina is severely ill with ME, and is being held against her will and that of her family and lawyer. This happened before in the UK, to Sophia Mirza, and she died as a result.

Petition against GP visits being capped

Petition to abolish Rents Conversion Policy

Petition for cumulative impact assessment of welfare reform (WOW Petition)

Petition to ban MPs from voting on matters in which they have a financial interest

Cat lying down playfully

I’m watching… Attack on Titan
I’m reading… Moving in the Prophetic (Greg Haslam)
Use of Weapons (Iain M Banks)
Ruth/1 Samuel
I’m coding… AS3 practice exercises
I’m playing… Battlefield 3

Saturday Summary

So, the post-Christmas return to parliament seems to have resulted in nothing but further misery for those already in a dire situation. I honestly feel right now like I’ve said everything I can say on the matter, which is why I haven’t really been posting much. It’s made me so angry that I can’t work out how to express it, and I’ve not been reading so much because sometimes, it’s just too upsetting. Those without enough to live on are having even that taken away from them; there aren’t enough jobs so they’ve introduced slavery; if you’re unable to work, our society no longer wants to keep you alive; those who are forcing millions to starve are demanding their own already-massive salaries go up again; those in charge do horrendous things, lie about them quite obviously, and get away with it. There’s one word that sums up what’s happening: evil.

But whilst I’ve been a bit quieter, I have been scheming away on an idea I’ve had for a while for raising disability awareness. I’m not giving up fighting, no way. I just wish I knew what to do, more than linking to things and shouting away. Part of the disillusionment – if it’s as far as that – is that I feel the awareness is too insular. What’s the use of making noise if the only people who hear it already know about it? There’s spreading information, yes, which is good – but I want to be changing things as well.

Having said that, if all I can do is a small thing, I’d rather do that small thing than give up and not have done anything at all!

Councillors against Cuts
A new network of counsellors who are pledging to vote against cuts. Worth supporting.

Is the public prepared for the benefits battering of 2013?
Millionaire’s government will make paupers of us all. (Mike Sivier, Vox Political)
An overview of the trials to come.

Austerity is a lie (Dr Simon J Duffy)

Until We Have a Cure: What CFS Patients Want Well People to Know (Priscilla Larson, ProHealth)

RE: Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study (Tom Kindlon, RSM Journals)
A good retort to yet-another misleading study.

Also, please remember to contact your MPs about the PIP criteria:

Sunday Summary

But what can we do? (Dr Simom Duffy)
Some strategies for dealing with the current UK government problems.

PIP needs to assess costs, not proxies & PIP: ignoring the costs(Aida Aleksia)
Summarising some of the many problems with PIP.

Money to burn: Fixing the economy part 4 (Mike Sivier, Vox Political)

Who pulled the switch? (Frances Coppola, Coppola Comment)
A great explanation of the cause of the economic crisis.

The government is in denial over the impact of cuts on disabled people (Left Foot Forward)

David Dennis – Disregarded? Not anymore! (Mike Sivier & David Dennis, Vox Political)
An interview with the author of  ‘Disregarded: The True Story of the Failure of the UK’s Work Programme’; provides a great overview of some of the issues involved.

The Big Picture – What Government should do and why they are doing the opposite (Alex Little, alittleecon)

Legal Analysis: Welfare Reform Bill & the Financial Privilege: the Lords have both the constitutional power, and good cause, to assert themselves (JJ, Black Triangle Campaign)
A lot of legal detail, but worth a read if you have the time.

Don’t take away my sheep (Aida Aleksia)
A Biblical take on austerity

Lib Dems’ new message for the new year: Don’t laugh – they mean it (Mike Sivier, Vox Political)
A great riposte to Clegg’s New Year message.