Your donation will fund research exploring the role of the gut microbiome in symptoms & digestive problems in NZ women with fibromyalgia.
Fibromyalgia is a chronic pain condition, poorly understood and difficult to treat.
The majority of sufferers are women. They live with constant pain, fatigue, headaches, digestive problems, sleep disturbances and more. It restricts their ability to function normally on many different levels.
This invisible condition has no obvious disability nor apparent cause, therefore patient experiences are often dismissed. Treatment options are limited and include pain killers, antidepressants and anticonvulsant drugs. No treatment is fully effective and many have to live with the symptoms their entire lives.
Studies have found that patients have AT LEAST one digestive problem, but how these relate to their symptoms is unclear. Often a patient’s symptoms change in relation with digestive function, but no-one knows why.
This research project aims to uncover more about this illness, which may provide information to help guide potential new treatments that target the digestive system and its microbiome to improve symptoms and quality of life in people living with fibromyalgia.
Our aim is to investigate whether gut bacteria are connected to other health problems, such as headaches, fatigue, sleep problems and digestive complaints, as well as other symptoms of fibromyalgia in New Zealand women. The suite of tests includes:
Stool microbiome (shotgun metagenomics),
Breath tests x3 (lactulose, glucose & fructose challenges),
Oral microbiome (shotgun - on those with elevated baseline breath gases),
Blood (RNA, BGL, electrolytes, FORT/FORD test),
Environmental mould (house),
Comprehensive questionnaires, and
Urine for Intestinal permeability (aka "leaky gut")
For more information visit the study website; https://www.theFidgitStudy.com
I am co-ordinating the research project.
Your contribution will help pay for testing for intestinal hyperpermeability (also known as leaky gut). The cost of this is $130 per person - we plan to recruit 100 women for this study. With extra money, we can check other markers in the urine as well.
Global Fibromyalgia Awareness Day 2 May 2022
Thanks to the enthusiasm of volunteers, we now have 60% of our target enrolments. Healthy controls are lagging a little at just over 40% of the goal.
I'm constantly amazed at how many people ask "what is that" when I say I'm researching a condition called Fibromyalgia. Yet about 1 person in every 20 has it.
People suffering with fibromyalgia are a hidden minority. So many women enrolling in the study have commented on how grateful they are that someone is interested in the condition and is trying to find answers, because they really haven't had any! So far recruits have travelled from Tauranga, Northland, Taranaki, Wellington, Nelson and Christchurch to participate in the study. And I want to say "Thank You" to them. Our fundraising efforts are more challenging - so I'm asking for you to help us again!
May 12th is Global Fibromyalgia Awareness Day. Please can you help to raise awareness of this condition by posting or commenting about fibromyalgia and this research project. Here are some ideas of how you can help to raise the profile of fibromyalgia:
- Use your social media to share facts, stats, figures and life stories about fibromyalgia.
- Host a fibromyalgia awareness event to raise funds for research (enter our CrowdFunder)
- Print out posters - email me for one! Put it up at your place of work/school/college
- Wear a fibromyalgia purple ribbon and talk to people about the disease when they ask why you’re wearing it.
IF YOU HAVE FIBROMYALGIA
- If you haven't done it already, tell people you have fibromyalgia
- Set up a Facebook page for people in your community with fibromyalgia.
- Join or host a local support group (or a virtual one)
- Contact your MP to talk about funding for fibromyalgia research and treatment.
- Become an advocate for fibromyalgia and speak out to the medical community and the media.
- Record your story on a video - post to YouTube (or do a Facebook LIVE) - Tell people about fibromyalgia and what it’s like to live with it.
Thanks so much!
Sharon & The FIDGIT Study Team.
Thanks so much for your contribution! It's great that you understand the importance of this work. The study is being conducted in Auckland, and requires one visit to the study site in Mt Albert. Here's the to the eligibility survey link: https://redcap.sydney.edu.au/surveys/?s=3FMMPLHY79TLYJNN Thanks again Sharon
Thank you so much for your support - I really appreciate it. Hoping you are ready/willing/able to share amongst your networks! Warm regards Sharon
Thank you so much for your support - I really appreciate it, and I'm glad you are doing better. I hope you can share about the study and the crowdfunder amongst your networks! Don't hesistate to let me know if you need some material! Warm regards Sharon
Thank you so much -I really appreciate it. There is a big overlap between CFS and fibromyalgia - maybe our findings will be useful in the CFS research space as well. If you can share the study link amongst your networks I'd be grateful - https://thefidgitstudy.com Warm regards Sharon