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)
http://hiddencourage.wordpress.com/2013/06/10/learning-to-receive/

The Blue Ribbon
http://cfsdocumentary.weebly.com/
http://www.kickstarter.com/projects/2074880665/the-blue-ribbon-me-cfs-and-the-future-of-medicine
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)
http://phoenixrising.me/archives/16986

Disability project makes music using invisible beams (BBC News)
http://www.bbc.co.uk/news/uk-england-birmingham-22818986

A woman’s voice (Rachel Held Evans, Theoblogy)
http://www.patheos.com/blogs/tonyjones/2013/06/14/rachel-held-evans-a-womans-voice/
On being yourself, not a representative of all women everywhere.

Petition to increase benefits by rate of inflation
http://epetitions.direct.gov.uk/petitions/42863

Petition against the removal of legal aid
http://epetitions.direct.gov.uk/petitions/48628

Petition to give people on Carer’s Allowance Working Tax Credits
http://epetitions.direct.gov.uk/petitions/43362
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
https://www.change.org/petitions/george-osborne-save-social-care-let-me-and-all-disabled-people-live-with-freedom-and-dignity

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The Pile Shall Not Grow

A recent post by Sarah Bessey alerted me to the fact that I too have a slight problem with books, in that I have quite a lot of them to read. It isn’t a problem in itself – I love reading – but apparently that love has gone a little wild. I thought I was reading, quite reasonably, four books – 1 fiction, 1 practical non-fiction, 1 theoretical non-fiction, and the Bible. I mean, I need a bit of variety, right?

But then, I actually took stock. With lists.

Currently, I am reading no less than 9 books. I recall several moments where I could not wait to finish the current book in order to get my mind into the next one, so I just started it anyway. In addition, I have another list of books which I have already purchased, just waiting to be read, and a further list of free e-books which I own and ideally would like to read someday, when I don’t have more pressing desires. Then there’s the list of books my husband bought when I was ill, which I could also read. Oh, and an Amazon wish list. Or three. Or four, actually. I’m pretty sure there’s four. You have to categorise the books, after all.

So, I am making the decision: The Pile Shall Not Grow. Oh, the wishlist pile shall most certainly grow. And probably the free e-book pile too – hey, they are free! But the two important piles, the books-I-am-currently-reading and books-I-have-bought-in-order-to-read… yeah, they are not growing one bit bigger.

I shall finish a book before adding a new book to the pile. The Pile Shall Not Grow.

I shall reduce the pile from 9 to… less than 9. I can’t conceivably have less than 3 (fiction, non-fiction, Bible), but I can have less than 9, at least. The Pile Shall Not Grow.

I shall finish the books I own before buying more I shall finish at least two books I have bought before buying a further book, until the “purchased but not read” list contains less than two books. It’s not a perfect solution, but it at least converges towards unity. The Pile Shall Not Grow.

Communicating with doctors

This post is part of the Patients For a Moment blog carnival, hosted this month at Abigail’s blog Hidden Courage, on the subject of “Getting the Attention You Need”. Be sure to check out her post on the 15th to read the other contributions this month.

As a patient, it is important to be able to communicate clearly to your doctor, and to get the most out of appointments. It can be very difficult, especially with tight schedules and complicated diseases, to facilitate understanding. So here are a few tips (not by any means exhausting) that I personally found helpful:

  • Make notes beforehand on what you need to say. Especially important if you have memory problems, but even if you don’t, the fluster of an appointment can easily cause something to be missed.
  • Adopt a posture and attitude of attentive listening, and be seen to take in what your doctor says, even if you disagree. I have found people more willing to listen to your side if you have listened to them.
  • Take a friend to remember things for you, and be a witness to what occurred.
  • Take notes in the appointment too, or ask the doctor to write out what they have suggested.
  • Be prepared to say “no” to things you disagree with, and stand up for yourself. If you know it will be harmful, don’t do it.
  • Conversely, be prepared to make compromises to get what you need. Your doctor might for example be unwilling to take certain actions until every avenue has been explored.
  • Be prepared to push for help. Trying the treatment for “just one more month” for the 7th month in a row is not going to make any difference. I often suspected my doctors were hoping I would just die or get better by myself so that they wouldn’t actually have to do anything.
  • If your doctor isn’t good, change. And if they have acted to your harm, put in a complaint. They might be harming other patients too.
  • Don’t try to ‘dress up’, or put on make-up to go; just look how you ordinarily look. It might make you feel self-conscious, but your doctor needs to know how you really are day-to-day to form an accurate diagnosis.
  • Be prepared to educate, especially if you have a little-known illness. That includes providing reliable information on the disease, as well as personal information that is specific to you.

What other tips do you have as a patient? Or, have you tried some of these to not much avail in the past?

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)
http://hiddencourage.wordpress.com/2013/06/03/pfam-call-for-submissions-getting-the-attention-you-need/
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)
http://johnnyvoid.wordpress.com/2013/06/05/dwp-plots-workfare-for-part-time-workers/

The Ultimate Theft (Pam Field, Think Left)
http://think-left.org/2013/05/28/the-ultimate-theft/

U.S., British intelligence mining data from nine U.S. Internet companies in broad secret program (Barton Gellman & Laura Poitras, Washington Post)
http://www.washingtonpost.com/investigations/us-intelligence-mining-data-from-nine-us-internet-companies-in-broad-secret-program/2013/06/06/3a0c0da8-cebf-11e2-8845-d970ccb04497_story.html
It was strongly suspected, but still scary to have it confirmed.

Thirty things I want the church to know about Christian Feminism (Leigha Cann)
http://sarahmccarten.com/2013/05/28/leigha-cann

All God’s Children: Loving our LGBTQ friends as we love ourselves (Sean Palmer)
http://www.thepalmerperspective.com/2013/06/06/all-gods-children-loving-our-lgbtq-friends-as-we-love-ourselves/

Petition to end gendercide in China
http://www.causes.com/itsagirlchinapetition

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)
https://www.facebook.com/questions/10151592269384590/
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.)
http://myjourneythrume.wordpress.com/2013/05/24/me-cfs-i-am-what-invisible-illness-looks-like/
The many ways in which ME is an invisible illness.

Inflation, deflation and QE (Frances Coppola, Coppola Comment)
http://coppolacomment.blogspot.co.uk/2013/05/inflation-deflation-and-qe.html
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)
http://www.christenacleveland.com/2013/05/listening-well-as-a-person-of-privilege-the-complete-series/
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)
http://sarahbessey.com/in-which-words-like-real-and-true-mean-things/
On the implications that language has.

Two win sickness benefits test legal challenge (BBC News)
http://www.bbc.co.uk/news/uk-22620894
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)
http://sojo.net/blogs/2013/05/13/christians-its-not-sin-change-your-beliefs
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
http://www.causes.com/actions/1752801-severely-ill-m-e-patient-held-in-hospital-against-her-will?recruiter_id=146091156
https://www.change.org/petitions/karina-hansen-help-raise-awareness-for-the-mistreatment-of-karina-hansen#share
http://www.ipetitions.com/petition/postcardtokarina/
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
https://secure.38degrees.org.uk/page/s/dont-cap-GP-visits#petition

Petition to abolish Rents Conversion Policy
http://epetitions.direct.gov.uk/petitions/47662

Petition for cumulative impact assessment of welfare reform (WOW Petition)
http://epetitions.direct.gov.uk/petitions/43154

Petition to ban MPs from voting on matters in which they have a financial interest
http://epetitions.direct.gov.uk/petitions/44971

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

Research, Controversies & Awareness

Thanks to everyone who joined in with raising ME awareness last week, whether through protests, funding charities or of course blogging. I have loved having my timelines filled with thought-provoking posts, challenging pictures and heartfelt cries that the way things are is not okay. Most people were posting about ME Awareness (which makes sense, given the date) so I’ll cover that too!

My favourite thoughts on research:
“On ME and Silence (ME Awareness Week 2013)” Tanya Marlow
A powerful mix of personal experience, hard facts, and the reality of why the noise about ME needs to change.
http://tanyamarlow.com/on-m-e-and-silence-m-e-awareness-week-2013/

My favourite tale of raising money:
“Blue Sunday – ME Awareness Day” Anna Jones
Running two parties at once to raise money for an ME charity.
http://lifeintheslowlanewithme.blogspot.co.uk/2013/05/blue-sunday-me-awareness-day.html?spref=fb

My favourite summary of events:
“International Awareness Day, May 12th 2013: Worldwide Protests and Events”, Mark (Phoenix Rising)
http://phoenixrising.me/archives/16915?utm_source=feedburner&utm_medium=twitter&utm_campaign=Feed%3A+aboutmecfs+%28Bringing+the+Heat%3A+An+ME%2FCFS+%28Chronic+Fatigue+Syndrome%29+Blog+From+Phoenix+Rising%29

My favourite person to follow:
Tom Kindlon, who has as far as I can tell been sharing pretty much every awareness raising image/quote/site he can find.
https://twitter.com/TomKindlon

My favourite awareness raising idea:
This has to be the most freaking awesome awareness raising thing I have ever seen, lighting up the Niagra Falls blue:

Niagra Falls lit blue at night

From May 12th – International ME/CFS & FM Awareness Day Facebook page

Research & Controversies

This post is part of the ME Awareness Week Synchroblog. Want to take part? Here’s how:

1. Produce your own post on the topic “Research and Controversies”, as narrow or broad as you like. It could be a blog post, video log, story, poem, picture, or even just a comment on the blog… it’s your take on the topic and what you want to say.
2. Post a link to what you’ve produced in the comments section. You might want to provide a short description, too.
3. Check out some of the other links; leave comments if you can, and share what you like!
4. Tell people about it – this is about raising awareness, after all.

Today’s subject is Research and Controversies in ME (or CFS, CFIDS, ME/CFS… and there’s a controversy right there!) But – why are these two subjects thrown together? We’re not talking about some rare and recently discovered mild illness – we’re talking about a widespread disease, something that by some estimates has more sufferers than breast cancer, HIV/AIDS and lung cancer combined; a disease which has had known outbreaks since the 1930s; a disease which causes one in four sufferers to be so disabled that they can’t take care of themselves.

Yet somewhere along the way, it did become controversial. What started out being widely acknowledged (due to the overwhelming medical evidence) as a neurological disease, which severely afflicted previously healthy-subjects and was often lifelong, got slandered as “all in the mind”, something put on by the bored and overworked to get a holiday or a free ride on benefits.

The overwhelming evidence still points towards it being entirely biological. It still says it’s a disease of the nervous system, and also the immune system, the hormone system and goodness knows what else. But somehow the public and the majority of healthcare workers (at least in the UK) have been spoon-fed the lie that it’s at best a mental disorder, needed to be treated by convincing the pretender that they are healthy, and forcing them to do increasingly large amounts of exercise and activity – the very things almost guaranteed to make the ill person worse. And other diseases have been bundled in too, further complicating valid diagnosis and useful treatment.

In the UK, the vast majority of research that purports to be into ME is a sham, based on false theories already a hundred times disproved before they were even voiced (had anyone cared to check). What little biological research there is is underfunded, ignored, and ultimately undermined by those who insist that this devastating, life-threatening disease is nothing more than imagination.

Samuel has a name for this: Misopathy*. (Mis: wrong, pathy: disease).

Of course, a lot of sufferers know exactly how this happened, and who is behind its continuation. But knowing how it happened is only important in so far as it helps stopping it happening to other diseases***, and turns the tide against suffering, giving ME the recognition it requires. Justice would be nice too, but in this life I’ll settle for freedom.

There is hope, though. There’s real biological research happening all the time, and it’s been increasing in the recent past. Just recently we have had the release of Newton’s muscle studies, confirming what we already knew about the abnormalities in muscle cells of ME patients, as well as one of the most exciting developments – the Rituximab trial, a potential treatment which is looking extremely successful in early studies.

So – what’s your take on it? What’s the biggest controversy, or the one which hits closest to home? What’s the most exciting development or most misunderstood part of the illness? Leave a comment here or on my Twitter!

ME Awareness Synchroblog

* Mis = wrongly/incorrectly, patho = disease
** And yes, it will happen to other diseases. ME wasn’t the first disease to be treated in this despicable way (MS? Parkinsons? AIDS?), and presumably won’t be the last.

Edited for clarity on 12/5/13