Fibromyalgia FibroCOVID - the aftershock of COVID

by FFU Scotland CIC Scotland's National Non Profit for Fibromyalgia in Irvine, North Ayrshire Council, United Kingdom

Fibromyalgia FibroCOVID - the aftershock of COVID

£75

raised so far

3

supporters

Fibromyalgia can affect anyone and now due to Covid we have a pandemic of people with FibroCOVID. Help us fund our pathway centre and more.

by FFU Scotland CIC Scotland's National Non Profit for Fibromyalgia in Irvine, North Ayrshire Council, United Kingdom

WE NEED YOUR HELP URGENTLY PLEASE

200-300,000 men and women of all ages and backgrounds, live with Fibromyalgia in Scotland alone and there is evidence of this significantly rising due to the pandemic. We are now seeing clear evidence in the numbers coming forward to our organisation either being diagnosed with Covid Fibro or in the throes of diagnosis. New Italian Research has backed our concerns of this growth evidencing this FibroCovid pandemic. It states this research fron September 2021 reproted the emergence of Fibro Covid is affecting 1/3rd long haulers and 45% of which are affecting men which is significant as the higer prevalence had always placed this  wrongly as merely a female syndrome. 

Our organisation has been at the forefront of Fibromyalgia in Scotland since 2017. Volunteer and disabled led, each person tirelessly working to improve not only the individual persons fibromyalgia journey but affect wider social change for the Fibromyalgia community, all live with the syndrome or are care support. 

Fibromyalgia is a highly debilitating syndrome of the central nervous system. It is however much more than just chronic pain with multiple symptoms.

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WHY DO WE NEED YOUR HELP URGENTLY

We had been in a building where we have had great support from our landlord however like many companies and owners, our landlord has decided to re design the building and has given us notice. We are therefore homeless but still trying to provide advocacy, support, guidance and yet our community christmas hampers, food and hygiene banks are now at risk as we have no where to work from. Due to the pandemic, much of our community fundraising work through attending events, hosting events has ceased which has had a significant impact on the income we can use to cover overheads. We therefore need your support to find money, a new base to work from so we can still provide a care pathway and centre for our fibromyalgia and fibrocovid community.


THE IMPACT WE HAVE MADE SO FAR

We have provided over and above our online presence of advice, peer support and education to now well over 2.6k members -

 1) Advocacy to more than 250 individuals requiring assistance with maximising benefits, full support to apply including appeals. 

2) Partnership working with referrals to other organisations for wider welfare needs, direct welfare assistance relating to the daily functioning of living with fibromyalgia

3) Advice and guidance and direct advocacy with health, employers, pension agencies and housing in order to assist the person's fibromyalgia journey and their voice being heard.

4) For the last 4 years we have provided food, toy and hygiene hampers for our most vulnerable members at Christmas across Scotland, including compassion hampers for those with further reduction in mental health and isolation. This was increased in 2020 as a result of the pandemic reaching 297 adults and their children over a 3 week period in 26 local authorities providing essential PPE, household and personal hygiene at a time of great anxiety for them further impacting on daily functioning of fibromyalgia, mental health and having to shield. This has now developed with partnerships with move on Glasgow, Fareshare, Falkirk hygiene bank and toiletries amnesty in providing a food and hygiene bank to those most vulnerable

5) Provision of face to face support meetings in Ayrshire and Edinburgh pre pandemic and early intervention information/support 1-1 drop ins in Glasgow, Ayr and Stevenston. This we want to restart as soon as we can but due to COVID this was halted. 

6) Launched Fibro week in 2018 which has now become #lightupforfibro annual campaign with 43 landmarks and local authority buildings participating in 2021 and the development of a #lightupforfibro campaign video to raise awareness of fibromyalgia across Scotland.

7) Travelled across many locations in Scotland with awareness/information stalls, including attending groups to educate about fibromyalgia.

8) Liaised with varied professionals and MP's across Scotland raising the profile of fibromyalgia, as well as being members of the cross-party for chronic pain and alliance Scotland. 

9) Partnership working with Dundee university producing with research and students, a comic around fibromyalgia and the pandemic which will launch soon online and be shared across health and other sectors.

10) Linking with phd students around research studies on Fibromyalgia.

11) Ongoing working partnerships - listening books for example which provides access to free audio book memberships for members who due to the impact of Fibromyalgia on dexterity and eyes can no longer read hard copy books which will be evaluated

11) In 2021 collaborated while restricted in community presence with multiple agencies and organisations to further the Fibromyalgia agenda in Scotland. These collaborations are within UK, other areas of Europe and the United States of America; however to further proceed we need funds to continue these as there is no current government or health and social care funding.

12) Providing opportunities for volunteer involvement and training. most of the volunteering pool have experience of living with fibromyalgia themselves or other long term conditions. Albeit the organisation welcomes any volunteer, one of our aims is to encourage and empower those that are further in their journey to support others living with fibromyalgia and whilst assisting their own self development, re-skilling and with the aim to impact positively on their own mental health, inclusion as many feel they cannot return to full-time employment at this time due to the fluctuation of their own fibromyalgia.

13) We are advocating for inclusion in the long Covid agenda as the long covid population are now being told they have FibroCovid. Many of these FibroCovid cases are as a result of contracting covid however it is still being observed at present about the psychological impact of the trauma faced by the front line workers and others facing trauma as a result of the pandemic due to the significant role of trauma triggering Fibro development whether physiological from likes of infection, psychological and environmental trauma.

14) Our Fibromyalgia pathway and centre has been designed to not only respond to the need of the current Fibro community in regards to assisting symptom self management including mental health , cognition and physical symptoms but also address the trauma triggering and the behavioural and psychological patterns. Support and provide crucial input to reduce stressors such as poverty, dealing with employment issues, benefit and healthcare system and provide supports to empower the person to navigate these but the approach has to be biopsychosocial and must include the newly emerged Fibrocovid and be fully involved in advocating for Fibromyalgia experiences thus better understanding of  Fibrocovid.

The centre pathway will also provide information and opportunities to access supported activity and encourage social reintegration for the fibromyalgia/ fibrocovid community that has had reduced mental health and increased anxiety as reported in 2021 research. 

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WHAT WILL YOUR HELP MEAN TO THE FIBROMYALGIA COMMUNITY

To encourage and empower those that are further in their journey to support others living with fibromyalgia and whilst assisting their own self development, re-skilling and the aim to impact positively on their own mental health.

Sustain and move forward with our goals to ensure the Fibromyalgia community in Scotland are better supported and provided for.

The help will mean we can continue to create our pathway centre so that we can provide the support for our members who still feel isolated following the COVID pandemic, their mental health which has worsened since the lock downs. The information our community needs about how to manage with fibro, how to cope living with it, applying for benefits thus continuing with the advocacy support. It will allow us to create a better link with research of fibromyalgia and  FibroCovid and also with both the government and the 14 health boards in Scotland so they have somewhere they can direct the patients in these areas who have been diagnosed with fibromyalgia or Fibrocovid. It will allow us to work with other chronic conditions such as Chronic Fatigue Syndrome/ ME and then Long COVID Scotland so as to enable a better general pathway for all the chronic/ long term ill communities.

WHY ARE WE THE BEST TO TAKE THIS FORWARD

We have the solution, the lived experience, the experience and the passion! Together we are stronger. 


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