Hope for the future of Fibro treatments?
People with Fibromyalgia often feel like there are few 'good' treatment options to help them with the symptoms of this complex condition. There have been a few new schools of thought in the last couple of years that hopefully helps to shine a light on the condition and get more researchers to explore it.
In one Fibromyalgia study, Researchers found that antibodies from people with fibromyalgia can trigger pain and other symptoms when injected into mice. This was a pretty groundbreaking study that suggested fibromyalgia may have an autoimmune component, challenging the idea that it’s purely a nervous system disorder (or all in the mind as some people have felt they've been told). The kind of findings open new possibilities for future treatments such as targeting antibodies to reduce symptoms.
Research paper here (just to mention, it's not very lay): https://www.jci.org/articles/view/144201#ABS
A new study from King’s College London shows that fibromyalgia symptoms may be caused by the immune system attacking the body, suggesting it is an autoimmune condition. Researchers found that transferring antibodies from people with fibromyalgia into mice triggered increased pain sensitivity and other symptoms.
https://www.kcl.ac.uk/news/new-study-shows-fibromyalgia-likely-the-result-of-autoimmune-problems
This article explores the complex nature of fibromyalgia, highlighting the challenges of diagnosis, management, and the significant impact on daily life. It features expert insights into current research, possible causes like genetics and trauma, and the future of treatments, emphasizing the need for better understanding and therapeutic approaches
Research brings hope for better understanding and management of fibromyalgia - if you see a study call please get involved.
***It's not unusual for people with conditions like Psoriatic Arthritis to develop fibromyalgia which is not exactly the same and can be challenging to separate in terms of symptoms: https://www.medicalnewstoday.com/articles/psoriatic-arthritis-and-fibromyalgia#co-occurrence
Have you heard about Informatree?
Informatree is an online resource designed to help people manage psoriatic arthritis. Developed by the University of Oxford with input from patients, healthcare professionals, and researchers, it provides evidence-based guidance on lifestyle factors like pain, fatigue, sleep, diet, exercise, and work. It does not focus on medications but aims to support self-management. The content is based on scientific reviews and patient experiences.
It is not a living document and was last updated in May 2021.
Find this fantastic resource here: https://www.informatree.org/
Manchester Memories Book
Manchester Memories is a book (or e-zine) project capturing the lived experiences of Manchester communities during the pandemic. Created by researchers, poets, and collaborators, it highlights how language and creativity help express emotion and resilience. It aimed to celebrate diverse voices and the role of language in overcoming adversity. Keep your eyes out for poems by Russ Cowper, a great Patient Research Partner friend of PsA HQ.
Patients as Paid Peer Reviewers:
A Game-Changer for Research Involvement
Exciting news from The British Medical Journal (BMJ) who has announced that patients actively involved as peer reviewers in the journal's editorial process will be offered remuneration.
This new scheme clearly demonstrates the value of having individuals with lived experience providing insights into research papers, particularly regarding their practical relevance and patient-centered impact. Whilst we can assume many academic clinical peer reviewers are supported financially by their institutions (broadly speaking), patients are often contributing their own time voluntarily. This approach also aligns with the value already recognised by the National Institute of Health Research through their guide on payments for patients and the public in research. By launching a remuneration scheme for patients, the BMJ will help enhance the prospect of more patient peer reviewers taking part whilst its overall aims are to help improve the quality and applicability of research, ensuring it better addresses real-world healthcare needs. This marks a significant step in integrating patient involvement into the academic publishing process.
As someone who believes strongly in the value of Patient and Public Involvement, I’d love to see more of us getting involved in opportunities like this. Your voice matters—and it can directly influence the future of healthcare. T
What do you think about patients as peer reviewers? Could this be something you'd consider doing?
Read the article here (it includes the peer reviewer sign up details):
New BSR Guideline Scope: Pain Management in people with Inflammatory Arthritis
I’m thrilled to share that I’m part of a fantastic team working on the recently published Pain Management in Inflammatory Arthritis guideline scope, developed by The British Society for Rheumatology. This important project aims to improve how pain is understood and managed for people living with conditions like psoriatic arthritis (PsA).
If you live with PsA, you’ll know how much of a rollercoaster pain can be. It’s not just about the physical discomfort—it affects every aspect of life, from work to relationships to mental health. Yet, for many of us, pain management can feel like trial and error, with no clear roadmap. That’s what this project is all about: changing the narrative around pain management and giving healthcare professionals the tools they need to support us better.
So, why did I join the team? As someone living with PsA, I’ve experienced firsthand the gaps in understanding and treatment options when it comes to managing pain. I wanted to ensure that the voices of those with lived experience are at the heart of this process. By being involved, I can advocate for practical, person-centered solutions that truly reflect the needs of people like you and me.
What will this project achieve? The guideline will set out evidence-based recommendations for healthcare teams, helping them understand the complexity of pain in inflammatory arthritis and ensuring a more holistic approach to care. This could mean anything from better communication about pain management options to more accessible therapies tailored to our needs. This is just the beginning, but it’s a vital step toward better, more compassionate care for people with PsA and other inflammatory arthritis conditions. I’ll keep you updated as the project develops—watch this space for further news 🖐🏻
Patient Initiated Follow Up (PIFU)
Patient Initiated Follow-Up (PIFU) is being rolled out by the NHS across all specialities as part of an outpatient initiative (the reasons for which you can read more about on the NHS England website). The process of managing it can be different across trusts and specialties. It is not a completely new concept (having been called things like ‘patient led follow-up’).
PIFU is not being rolled out in a standardised way is of great concern along with the worry that it will pose risks to patients who already struggle to navigate the system and get the support they need, when they need it. In 2021, Mel joined a multi-disciplinary team of experts, led by Professor Laura Coates who have been meeting regularly to discuss, co-create and initiate a two-step proactive approach to PIFU practice in rheumatology.
On #WorldArthritisDay2024 , a PIFU ‘Toolkit’ of resources designed to help patients understand it and clinicians navigate it in a logical, more standardised way was launched. The toolkit, funded by the BSR, includes animated videos and leaflets for patient and PIFU best practice guides for clinicians.
Step 2: will see the launch of an upcoming study called *TAILOR* - a much needed trial to evidence and ensure PIFU works well for all patients, particularly vulnerable groups. Watch this space for further news 🖐🏻
Brit-PACT Annual Conference
The 9th Annual Brit-PACT hybrid conference took place on Friday 11th October. Interesting themes included 'The challenge of accessing effective obesity treatment in the context of chronic disease', a patient perspective story from Brit-PACT Patient Partner Clare Allen, a talk around 'Axial involvement: why does it take so long to diagnose' and news of a new study designed to look at and develop a clinical tool for un-recognised spinal inflammation in Psoriatic Arthritis (an idea suggested by Mel at last years conference)🖐🏻
A video of the conference is available by request via www.britpact.org
Note: BritPACT was formed in 2014 through the collaboration of clinicians and patient partners with a passion for increasing knowledge, awareness and management of psoriatic arthritis. In 2020, Brit-PACT became a charity registered in the UK (1189246) with an aim 'to facilitate and advance research and best practice in psoriatic arthritis in the United Kingdom'.
The Psoriatic Arthritis Registry
The Psoriatic Arthritis (PsA) register, run by the University of Aberdeen on behalf of the British Society for Rheumatology (BSR) is a large, ongoing database project that collects detailed health information from people living with PsA over time. It tracks patients’ health, treatments, work impacts, and quality of life. By gathering this data, researchers can analyse patterns, cost vs effectiveness of treatments, and the social impacts of PsA. This long-term data collection allows for diverse studies on how PsA progresses, how patients respond to different therapies, and what factors affect their well-being and productivity in real-world settings.
If you are interested in further information or taking part in the registry data collection: www.abdn.ac.uk/iahs/research/epidemiology/bsrpsa-1469.php
Hippocrates Consortium
The HIPPOCRATES project is a large public-private partnership focused on advancing personalised treatment for Psoriatic Arthritis (PsA). By building a comprehensive knowledge base and collecting biological samples, it aims to identify specific patient subgroups, validate biomarkers, and improve imaging techniques. The ultimate goal is to enhance quality of life for PsA patients through more targeted therapies and support future research infrastructure.
For more details, visit HIPPOCRATES www.hippocrates-imi.eu
There is also a paper talking about the consortium work in relevance to meaningful patient involvement you can read www.ard.bmj.com/content/81/Suppl_1/134
Listen to Dr Oliver Fitzgerald discuss this project with me on my podcast channel page.
NHS Support: Making decisions to help you live well with chronic primary pain
The NHS document "Making decisions to help you live well with chronic primary pain" is a decision aid for people with chronic pain, focusing on managing symptoms and improving quality of life. Pain is a problem for many people with rheumatic conditions. The NHS document outlines different support options, encourages open communication with healthcare teams, and emphasises personalised strategies for pain management.
For the full study report: https://www.england.nhs.uk/wp-content/uploads/2024/09/PRN00675-ii-making-decisions-to-help-you-live-well-with-chronic-primary-pain.pdf
The ARMA Freedom of Information Report on Integrated Care Approaches in MSK Services, UK
The ARMA FOI Report 2024 highlights challenges in accessing musculoskeletal (MSK) services across the UK, revealing disparities in care availability and waiting times. It emphasises the need for consistent service standards to improve patient outcomes and access to MSK care. Key recommendations include better resource allocation and integration of services to reduce delays in diagnosis and treatment, ultimately aiming to enhance patient experience and outcomes in MSK healthcare.
For the full study report: https://arma.uk.net/wp-content/uploads/2024/08/ARMA-FOI-Report-Sep2024-Final.pdf
The National Early Inflammatory Arthritis Audit (NEIAA)
The National Early Inflammatory Arthritis Audit (NEIAA) assesses the quality of care for people with early inflammatory arthritis (EIA) across England and Wales. The sixth annual report highlights improvements in timely treatment initiation and introduces new benchmarks for rare autoimmune rheumatic diseases. Key findings show stable remission rates, improved treatment timeliness, but ongoing geographic disparities and mental health concerns. The NEIAA remains crucial for enhancing care and standardizing treatment practices.
For the full study report: www.rheumatology.org.uk/news/details/The-sixth-NEIAA-annual-report-Improving-the-quality-of-EIA-care-across-England-and-Wales-?articleId=919
Patients' Perspectives on the Psychological Impact of Inflammatory Arthritis
This study explored the psychological impact of inflammatory arthritis (IA) on patients and their support needs. It used a survey with open-ended questions and received 1,210 responses. Findings highlighted common emotional challenges, including feelings of isolation, pain, and fatigue, which significantly affected patients' lives and relationships. Patients noted a need for more empathetic communication from healthcare providers and valued peer support. The study underscores the importance of mental health support alongside physical care for IA.
For the full study report: www.pubmed.ncbi.nlm.nih.gov/27605495/
'FibroFog' Research
Researcher Sandi Derham, supported by The Bath Institute for Rheumatic Diseases (BIRD) engaged fibromyalgia patients to help with her research into “fibrofog”—a cognitive symptom affecting clarity and focus. Patients describe fibrofog as highly problematic, motivating Sandi to request BIRD help host three workshops from January 2018 to April 2019. Each workshop invited patients to explore research questions and designs that would capture their lived experiences. Sandi hopes to use the findings and take this research work forward
To read link to the full paper, presented as a poster at EULAR :
Patient Perspectives of Telemedicine during the Covid Pandemic
A Brit-PACT funded, *patient driven, study examined how people with psoriatic arthritis (PsA) felt about using telemedicine during the COVID-19 pandemic. It found that while some patients appreciated the convenience of remote appointments, especially when they had stable symptoms, others missed the in-person experience, including physical exams and more personal interaction. Patients who already had a strong relationship with their healthcare providers were generally more comfortable with virtual appointments, while newer patients preferred in-person visits to build rapport and manage symptoms better.
If you are interested in reading the full study paper:
www.bmcrheumatol.biomedcentral.com/articles/10.1186/s41927-021-00242-y
*Brit-PACT Patient Partners at the time: Mel Brooke and Andrew Parkinson.
Patient reported views on how diet affects their PsA
In 2019, an e-survey study (set up by Dr Will Tillett, Mel Brooke and Olivia Ellis) explored how people with psoriatic arthritis (PsA) modify their diet and the effects they perceive on their symptoms. The survey, of 174 people, found that many had made dietary changes, such as avoiding gluten, sugar, dairy, and alcohol, with some reporting improvements in fatigue, stiffness, and joint pain. Supplements like vitamin D and fish oil were also commonly used. The findings highlight the need for more research to provide clearer guidance on whether dietary changes can help manage PsA symptoms.
Journal link here: https://academic.oup.com/rheumatology/article/58/Supplement_3/kez110.098/5444748
The GRAPPA treatment guide for PsA
The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) PsA Patient Guide to Treatments provides an overview of treatment options for psoriatic arthritis, including medications, lifestyle changes, and self-management strategies. It explains different drug types, such as biologics and disease-modifying drugs, how they work, and what to consider when choosing a treatment plan. The guide also highlights the importance of working with healthcare providers to find the best approach for managing symptoms and improving quality of life.
(It may interest you to know that PsAZZ members including Mel Brooke and Jana James were part of the patient group who wrote this booklet)
Read it here: https://www.grappanetwork.org/wp-content/uploads/2023/01/GRAPPA_PsA_Patients_Guide_to_Treatments_v1.1__1_.pdf)