Will we all get a sense of what it is like to live with a chronic illness?

Homeworking is something which always appealed to me – I loved the idea of having a longer lie in, avoiding the transport to and from work and being able to work from the comfort of my bedroom. The reality of it actually couldn’t be further from the truth. I’m on day 4 of working from home, and already I would love to be back in at the office. In line with current government guidelines, I am only escaping the house for small time each day to go a walk. It’s a really tough challenge, but I am already finding it difficult.

But I ponder the question, when things get back to normal, will people begin to appreciate what we have more than they did previously? For many with a chronic illness, this has been the reality for a long time – even a long time before we had heard of coronaviruses. From my time at the charity, I’ve developed a strong sense of just how many people are housebound, or if not, have to regularly stay home and miss out on a social life because of their illness. These are things which will often be the norm for many with fibromyalgia – something which Fibromyalgia Action makes efforts to raise awareness of.

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Corona Virus and Fibro Video

Please find below our recent video about coronavirus and fibromyalgia. More info @ www.fmauk.org/coronavirus

Update on our proposed petition

Following the disturbing documentary which aired recently, FMA UK released a statement on the toxic culture which exists within the DWP towards people with fibromyalgia and presumably other life-changing conditions. From what we hear almost daily, this isn’t a one-off issue and a vast number of people with chronic illnesses have suffered from discrimination and a lack of empathy from staff within the organisation.

We are now in the position where we have the proposed wording for a petition to submit to the DWP on the issue of appropriate internal training to improve how claimants are treated by assessors.

We were originally planning to launch it around about now, but due to the current Coronavirus situation in the UK, we don’t believe now is the time to do so for 2 reasons:

-  We don’t believe the petition would gain as much attention and signatures as it would if there wasn’t a pandemic virus situation going on.

-  We don’t believe that the appropriate government response or time would be provided given the ongoing situation in the country.

To gain maximum effect and reach more people, we would prefer to launch it when people have less things on their mind at the moment, as they so understandably do with COVID-19. So with this in mind, we will delay the launch of the petition, but people should be aware that it is something we intend to do, as to speak up and advocate change for those who feel voiceless.

Corona Virus Information

Placeholder for Coronavirus information - This will be updated with more information

Let me start by acknowledging fully that Coronavirus and the disease COVID-19 are quite possibly the most important and immediate health issues we have ever seen. It is wholly understandable that everyone needs and wants to ask for help, to discuss and to consider everything about the issues that we are facing.

On Facebook groups, online forums and other channels there are plenty of opportunities to share support and information. However, there tends to be no specific health care professional knowledge or experience there which is in any way deeper or more helpful than appears elsewhere.

Items that are being pasted on these channels from Facebook and elsewhere are often incorrect or even worse dangerously so. We have seen people advertising producs based on false information relating to fibro and this virus.

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FMA UK Statement on the recent BBC Panorama documentary

Regarding the disturbing panorama programme last night – https://www.bbc.co.uk/iplayer/episode/m000g6rz/panorama-the-million-pound-disability-payout

FMA UK have worked to improve training content that people working at the DWP use when considering people that are diagnosed with fibromyalgia. Therefore, we are shocked, dismayed and angry that there appears to be a culture of intolerance towards people with disabilities and specifically fibromyalgia. It certainly explains some of the stories that we receive on our helplines about people being mistreated at assessments. To hear from Charlotte within the DWP talking about the "cynical attitude" and them "not being empathetic towards certain illnesses." However, it was really shocking to hear comments like "another claim of fibromyarse." This is not acceptable on any level and is clear discrimination.

We would ask that the DWP respond to this mistreatment of people with fibromyalgia and reassess how training is applied so that people that are diagnosed with fibromyalgia are not dismissed out of hand before their individual situtation is considered. We are not looking for special treatment but we do expect to be treated fairly and assessed with compassion.

Coronavirus

We have had a few enquiries about corona virus (Covid-19) on our helplines and other communication channels. People are interested in how it may affect people with fibromyalgia. We have also had requests about whether we could perhaps help them as they have felt they need to self-isolate.

First of all we are a small charity so providing individual help like this would not be something we could do. On how people with our condition will be affected by the virus or whether we are more at risk than people without it, it is hard to give an accurate answer.

The diversity within our community in terms of additional conditions, age, and other factors is great. There is no one size fits all advice. Generally speaking a diagnosis of fibromyalgia will not make you a vulnerable person to this virus. If your social interactions are curtailed due to fibromyalgia, you may be at less risk than the majority of people.

However, there are many in our community that are older, or have other co-morbid conditions including those that do compromise the immune system so these people will need to judge their individual risk.

The overriding advise at present is to take sensible steps to avoid becoming infected in the first place. Increased hand washing and being aware of the current guidance from the NHS. This is available here: https://www.nhs.uk/conditions/coronavirus-covid-19/

Again, we do not believe there are any special requirements for someone with fibromyalgia and a common-sense approach is required.