Tuesday, 18 February 2020

Been in a Clinical Trial? Researcher Wants to Hear from You

Hi lovely lupies, I received the following request for people who have participated in clinical trials to take part in some research.  If you are interested, please contact Jessica directly, via her email address.


Hi Iris, 

I hope this note finds you well! I came across your wonderful blog Sometimes, it is Lupus and wanted to reach out to you for assistance for a project.

My name is Jessica, and I work at The Center for Information and Study on Clinical Research Participation (CISCRP), an independent non-profit organization based in Boston, Massachusetts. CISCRP is dedicated to educating the public about clinical research; as part of our mission, we regularly engage with patients through advisory board meetings, global surveys, and workshops to include the patient voice in research endeavors.

At this time, CISCRP is planning to conduct a series of 1-hour telephone interviews among individuals who have participated in clinical trials and we were wondering if you might be interested in this opportunity. During the interview, you would be asked to reflect on your past clinical trial experiences and to provide feedback on patient-facing materials being developed to help guide patient discussions around participation. As part of this project, we are looking to conduct telephone interviews for individuals diagnosed with Lupus that live in Australia that have participated in a clinical trial.

The goal of the interview is not to recruit patients for clinical trials, but rather to learn from patients about their experience and to provide feedback in order to benefit future patients and minimize the burden of clinical trial participation.  As a thank you for your time, CISCRP will provide honoraria to those who are eligible and participate in the telephone interview.

Through searching your blog, it is my understanding that you have not participated in a clinical trial, however, I was wondering if you might know of anyone who would eligible and interested in this opportunity. Any assistance you can provide would be greatly appreciated!

Warm regards and thank you in advance for your time and consideration!

Jessica 


Jessica Cronin
Research Associate, Research Services
Center for Information & Study on Clinical Research Participation (CISCRP)
Phone: 617-725-2750 x 404


CISCRP_Logo

One Liberty Square, Suite 1100
Boston, MA 02109

Thursday, 6 February 2020

Centrelink is Watching

There's a lot of things I hate about living with lupus.

One of those things is relying on a Disability Pension from Centrelink.

I don't like the feeling of being dependent. I also miss being able to pay taxes.  That probably sounds weird if you're one of those people who would do anything to avoid or minimise tax, but I really love education, healthcare, police, courts, all those amazing things taxes pay for.  As well as feeling dependent, I'm upset that I'm not paying my way.

I can't go back to work, because I never know when I'm going to be sick, and no employer wants an employee who needs a fortnight to recover from a day's work.

So, I thought I would try to do things in a small way, to work towards reducing my dependence.  I write my books, but those haven't yet made a profit.  I had a couple of attempts to monetise my blogs, but gave that up as pointless.

Half way through last year I started putting aside $50 a fortnight to buy shares.  A month or so ago, I bought my first $600 worth of shares. That's not high finance, but over time, I hope it will make a difference.

Doing the right thing, I added the shares to my list of assets with Centrelink.

A week later, I received a letter from Centrelink, demanding statements for my bank accounts, and asking, in these exact words: "Where did the money for all these shares come from?"

Yes, that princely sum of $600 is enough to make Centrelink suspicious I was doing something dodgy.  I had to detail every cent I owned, and explain my budget and how I managed to save that massive amount of $600.

I haven't heard from Centrelink again since then, and my pension wasn't stopped, so I guess they have accepted my explanation.

But here's the thing: if I'd spent $50 per fortnight on alcohol or gambling, Centrelink would neither have known or cared.  Instead, I spent it on trying to be financially responsible.  That doesn't fit the stereotype of someone on a Centrelink benefit, so it was suspicious.

The government's been experimenting with a cash-free welfare card, with the idea that people on welfare have to have everything they do controlled by someone who knows better.  Support for that comes from the stereotype that people on low incomes can't manage money.

In real life, people on low incomes have to know more about managing money than people on high incomes.  We learn because we have to make every dollar stretch to its maximum; it's the only way to survive.

Tuesday, 4 February 2020

I've done it all wrong, again

Their email:
 
In today’s digital world if you want to stay ahead of competition, you should always be prepared to overcome new updates by Google and be ready with new strategies to implement. 

I have a complete analysis report ready with me which shows your website needs immediate improvement. Some of the points are mentioned below: 

  • Due to poor and unauthorized link sites.
  • Relevant keyword phrases are not visible on first page listing.
  • Due to HTML validation errors and warnings present in website.
  • Your website is not search engine friendly.
  • Website content quality is not high standard.
  • Website is having on-page and on-site issues.
 
Our experienced Google Analytics professional understand all recent updates. We will prepare an advanced digital marketing campaign to generate maximum traffic and boost your search engine ranking.
 
For more details please reply. We have 24*7 supports, so you can contact any point of time with your website issues.
 
 
 
Thanks & Regards,
Linda XXXXXX

My reply:

Hello Linda,

If you’d read my site you would realise that I usually make fun of emails such as yours for the entertainment of my readers. 

Let’s look at your complaints, starting with content quality.  This site is about my life as a person living with a chronic life-endangering disease.  I’m sorry if you don’t find my life of sufficient quality for your standards.  You are not my target audience.  Other people who do live with lupus understand and relate to my struggles.  Some of them even find some comfort in finding they are not alone facing this horror that our lives have become.

Relevant keyword phrases are not visible of first page listing.  I don’t know what you think is relevant.  If you were looking for the keyword “lupus”,  you’d have found it.

Now on to HTML errors, on-page and onsite issues.  Well those aren’t me.  That’s the blogger platform.  You should address your suggestions to Google, since they do that bit.

The website isn’t search-engine friendly.  Yet somehow you, who clearly don’t even know what it’s about, found it.  Again, all the technical bits are run by Google, so tell them what they need to do to make their stuff search engine friendly.  I’m sure they’ll find you just as amusing as I do.

Then there’s the unauthorised links.  I own this blog and I write it.  Anything I put on it, I authorised.

And now, can I make a suggestion to you?  If you want to look professional, and pretend you are part of an organisation (as in “our experienced….”) perhaps you could have something other than a personal gmail address?

Kindest regards
Iris Carden

Friday, 18 October 2019

Lupus Nephritis Survey

Click here to take part in the survey.
British research organisation Opinion Health is looking for Lupus Nephritis Patients in both the USA  and Australia to take part in a survey aimed at improving the patient experience.

If you want to take part, click on the link to give your information.  This will be followed up with a telephone interview.  The phone interview will take 60 minutes.  So if you are interested, you don't have much time to sign up.

Participants will be rewarded with an Amazon voucher ($US 160 for US participants, $AU 220 for Australian participants.)


Saturday, 12 October 2019

Quick Health Risk Check

For a quick check of you risk for heart disease,
kidney disease and diabetes, go to the
Health Direct Risk Checker.
OK lovely lupies, I know we all spend too much time at the doctor, and far too much time worrying about our health.

If you want to quickly eliminate some worries, check out the Health Direct Risk Checker. You fill out a five-minute survey, and get an assessment for your risk for heart disease, kidney disease and diabetes, and some personalised advice on reducing risk factors.

Health Direct is an Australian Government funded site, which provides reliable information on a number of health matters, including medication information sheets, and a symptom checker.

More useful information from Health Direct:

Monday, 19 August 2019

Exhaustion

When lupies talk about fatigue and exhaustion, healthy people tend to say something like, "I get tired, too."

Let me tell you what fatigue for a lupie is like.

I'm in the process of painting our front room.  It's a long, slow job, because I can only use a paint roller for about five to ten minutes before I become exhausted and have to stop.

What does exhausted feel like?

Stage one: Everything starts to hurt, I'm unbelievably tired, and anyone looking at me will notice the redness appearing across my nose and cheeks (the infamous lupus butterfly rash.)

Stage two: I'm weak all over. My arms are so heavy I can hardly hold them up. My legs and gut feel like wobbly jelly.

At stage two, I have to sit down and have a cool drink.  After about ten minutes' rest, I am able to clean up, then go and sit in the shower for a while.

Now, I know some people will say, things like, "Just push through it, you'll get your second wind."

I used to think that.  Then I tried "just pushing through it" while doing a couple of other basic household  tasks. I've tried it a couple of times because, clearly, I'm a slow learner.  

Guess what happens next after the jelly wobbles?

Stage three is pretty gross.  It comes on quickly (only a minute or two) after stage two. It is simultaneous vomiting, and loss of bowel and bladder control. That's right.  All at once.  At the same times, my legs tend to buckle underneath me, and I find myself sitting on the ground totally incapable of helping myself.

I don't push myself past stage two any more.

Sunday, 5 May 2019

Lupus in Australian Indigenous communities will be the focus of a new research project

Dr Fabien Vincent
Sometimes when we're dealing with a condition like lupus, it seems like we're in it on our own, and no-one else is doing anything about it.

Actually, someone is doing something about it.  I keep saying that my heroes wear lab-coats.  These are the people who are quietly working to improve the lives, and even save the lives, of lupies around the world.  (With six million of us world-wide, every step forward in lupus research means a lot to a lot of people.)

One of those heroes is Dr Fabien Vincent from the Rheumatology Research Group at Monash University.

Dr Vincent was recently awarded a Rebecca L Cooper Medical Research Foundation Grant for identifying molecular signatures in Indigenous Australians with lupus. 

He said, "We ultimately aim to improve our understanding of treatment of lupus to develop a more targeted and personalised medicine for patients, and help to close the health gap between Indigenous and non-Indigenous Australian lupus sufferers."


He has provided a list of some of the recent publications related to his and the Monash team's lupus research.  Here's the list:


Vincent FB, Kandane-Rathnayake R, Hoi AY, Slavin L, Godsell JD, Kitching AR, Harris J, Nelson CL, Jenkins AJ, Chrysostomou A, Hibbs ML, Kerr PG, Rischmueller M, Mackay F and Morand EF. Urinary B Cell-Activating Factor of the Tumor Necrosis Factor Family (BAFF) in Systemic Lupus Erythematosus. Lupus 2018; 27:2029-40
 
Mende R†, Vincent FB†, Kandane-Rathnayake R, Koelmeyer R, Lin E, Chang J, Hoi A, Morand EF, Harris J† and Lang T†. Analysis of Serum Interleukin (IL)-1b and IL-18 in Systemic LupusErythematosus. Front Immunol 2018; 9:1250
† Equal contributors

Vincent FB, Slavin L, Hoi AY, Kitching AR, Mackay F, Harris J, Kandane-Rathnayake R and Morand EF. Analysis of urinary macrophage migration inhibitory factor in systemic lupus erythematosus. Lupus Sci Med 2018; doi: 10.1136/lupus-2018-000277
 
Vincent FB†, Lin E†, Sahhar J, Ngian GS, Kandane-Rathnayake R, Mende R, Hoi AY, Morand EF, Lang T†, Harris J†. Analysis of serum macrophage migration inhibitory factor and D-dopachrome tautomerase in systemic sclerosis. Clin Transl Immunology 2018; 7:e1042
† Equal contributors
 
Vincent FB†, Nim H†, Thomas JPW, Morand EF† and Harris J†. Effect of storage duration on cytokine stability in human serum and plasma. Cytokine 2019; 113:453-7
† Equal contributors

Vincent FB, Bubicich M, Downie-Doyle S, Mackay F, Morand EF and Rischmueller M. Serum soluble Fas and Fas ligand(FasL) in Primary Sjögren’s Syndrome. Clin Exp Rheumatol 2019 

 Vincent FB, Kandane-Rathnayake R, Hoi AY, Slavin L, Godsell JD, Kitching AR, Harris J, Nelson CL, Jenkins AJ, Chrysostomou A, Hibbs ML, Kerr PG, Rischmueller M, Mackay F and Morand EF. Urinary B Cell-Activating Factor of the TumorNecrosis Factor Family (BAFF) in Systemic LupusErythematosusLupus 2018; 27:2029-40
 
Mende R†, Vincent FB†, Kandane-Rathnayake R, Koelmeyer R, Lin E, Chang J, Hoi A, Morand EF, Harris J† and Lang T†. Analysis of Serum Interleukin (IL)-1b and IL-18 in Systemic LupusErythematosus. Front Immunol 2018; 9:1250
† Equal contributors

Vincent FB, Slavin L, Hoi AY, Kitching AR, Mackay F, Harris J, Kandane-Rathnayake R and Morand EF. Analysis of urinary macrophage migration inhibitory factor in systemic lupuserythematosus. Lupus Sci Med 2018; doi: 10.1136/lupus-2018-000277
 
Vincent FB†, Lin E†, Sahhar J, Ngian GS, Kandane-Rathnayake R, Mende R, Hoi AY, Morand EF, Lang T†, Harris J†. Analysis of serum macrophage migration inhibitory factor and D-dopachrome tautomerase in systemic sclerosis. Clin Transl Immunology 2018; 7:e1042
† Equal contributors
 
Vincent FB†, Nim H†, Thomas JPW, Morand EF† and Harris J†. Effect of storage duration on cytokine stability in human serum and plasma. Cytokine 2019; 113:453-7
† Equal contributors

Vincent FB, Bubicich M, Downie-Doyle S, Mackay F, Morand EF and Rischmueller M. Serum soluble Fas and Fas ligand(FasL) in Primary Sjögren’s Syndrome. Clin Exp Rheumatol 2019 

Vincent FB, Kandane-Rathnayake R, Koelmeyer R, Hoi AY, Harris J, Mackay F and Morand EF. Analysisof serum B cell-activating factor from the tumor necrosis factor family (BAFF)and its soluble receptors in systemic lupus erythematosus. Clin Transl Immunology 2019; 8:e01047



I have to admit some of those articles are over my head (right, I admit it, all of them are over my head, my degrees are in a very different field) - but that's OK  - I don't have to understand the details, I just appreciate that someone who does understand is doing the work.

If you want to read something of Dr Vincent's that is easier for non-scientists to read, here are some of his articles (originally from The Conversation) that have been republished here at sometimesitislupus.com : 






The tenth of May is World Lupus Day - if you want to mark the day by doing something positive to help people with lupus, you might want to donate to lupus research at Monash or other Australian Universities. You can find donation links in the right-hand column of this blog.

Thursday, 4 April 2019

NDIS

I am overwhelmed at the moment.

A while ago, I applied for the National Disability Insurance Scheme.  I have no expectation whatsoever of being approved, but the agency that supplies the little bit of home help I get under a state government scheme has told me I have to apply because the current scheme is ending.

So I dutifully took the form to my GP, she filled it out, and I dutifully posted it.

Now, I've received the same form from the NDIS, with a letter requesting I have my GP fill it out (again).

Of course, I range the NDIS, and asked if they didn't get the form I already sent.

They got it.  But they want more details - (and apparently the exact same questions should get different, or more detailed, answers) - and they want to know how many days each month I will have a bad day.

Apparently, they think there is a typical month to go by. (Yes, lovely lupies, I can hear you laughing.)

Can I tell you how many days in a typical month I will be sick?  No.  Because I have lupus. (Yes, I'm yelling, and belting my head on the wall simultaneously.)  There is no such thing as a typical month.  I don't know if and when I'm going to have a bad week, a bad day, a bad month, or a bad year. Lupus is completely unpredictable!  How can someone dealing with disability services in any way not know that?

If I don't get help, and have to do the things that I currently have someone else do for me, I will have more bad days - I can predict that, because right now someone does all the heavy work around the house, stuff that will overwork my joints and leave me in serious pain.

If I do get the help, I'll have fewer bad days, because I won't be overstressing my joints.

So I'll probably be more qualified to get help if I don't have help.

Now, apparently the federal government's budget surplus is built at least partly on the slow uptake of consumers using the NDIS. NDIS funds aren't being distributed to support people with disabilities, but just going back into government coffers to be reused for other things. For some reason, disability advocates are complaining about that. (Gee, I wonder what their problem is.)

I can see why.  If you ask the same questions over and over again, expecting to get different answers, then you're never going to get anywhere.  I've barely started the process and I'm considering giving up, because I can't answer their nonsensical questions, and my doctor won't be able to either. (Oh, and because my GP is so popular, I have to wait five weeks for an appointment, but that's another whinge.)


Related Post:
Good Days and Bad Days

Saturday, 23 February 2019

I'm a Loser (In a Good Way)

As I've said before,  I'm feeling really well right now.  There's no fatigue, no pain (apart from a sinus infection and a pain in my chest from a persistent cough.)  Really, I am feeling the best I have in years. Even my gut is behaving like a normal person's.

Feeling so well has given me the energy to address some issues that have been bothering me for years.

So (drumroll) I have lost five percent of my bodyweight so far this year.

I know feeling good won't last for ever, but my hope is that the changes I make now will continue to work when the days come that I'm too sore and fatigued to do anything or care about anything.


Friday, 22 February 2019

Discounts

As I mentioned in an earlier post, I'm taking advantage of feeling well at the moment, losing weight with Weight Watchers, and  sewing new clothes in smaller sizes so I have something to wear as I get thinner.

Always on the lookout for a cheaper way to do anything, I've picked up a couple of discount codes, which I'm going to share with you.

Weight Watchers:  If you sign up with a new plan, this link will get you a month free. https://www.weightwatchers.com.au/au/checkout/iaf/?iaftoken=5130021D00

Super Cheap Fabrics.  This is a great place to get sewing fabrics at a good price. If you spend more than $100 they will give you free postage as well - which makes it an even better deal.  This link gives you 15% off on your purchase. http://supercheapfabrics.refr.cc/iriscarden

Note: this is not a paid or sponsored post, however if you use these discount links, I will also receive a discount on my purchases.