Interview conducted by April Cashin-Garbutt, BA Hons (Cantab)
What is chronic fatigue and how many people with rheumatoid arthritis are affected by this symptom?
Chronic fatigue is about much more than merely feeling tired and when it is at its worst, people feel unable to do almost anything, so it can impact absolutely every area of their life.
Sometimes, those who experience it report that it’s as different from tiredness as the flu is from a cold. Some people have also described it as “brain fog” or like “wading through treacle”.
An episode of chronic fatigue may start without warning and it can affect people differently, with some becoming quite incapacitated by it while others try to carry on regardless.
Either way, people with RA (rheumatoid arthritis) often rate chronic fatigue as more significant than battling with chronic pain.
One of the quotes from the survey we just completed was: “I feel like I have limbs of lead and even contemplating the smallest of tasks leaves me totally drained. It also leaves me feeling tired emotionally.”
I can certainly relate to that. I’ve lived with RA for over 30 years, so I know how it affects me personally and I can certainly identify with a lot of the comments we’ve had in the report.
There are approximately 690,000 people in the UK with RA. In our survey of nearly 2,000 people, 89% reported that they experience chronic fatigue, which gives some idea of the numbers.
What is known about the causes of chronic fatigue?
There is not one single factor that causes chronic fatigue. It’s part and parcel of the normal disease process in RA and the causes are often complex and not particularly well understood, either by the patients themselves and or by health professionals.
There are a number of possible factors associated with its occurrence and also its severity such as pain, stress, depression, inflammation and disability. These are all factors that may contribute in varying degrees at different times and depending on how well controlled the disease is.
We know inflammation can cause chronic fatigue, potentially due to the presence of the cytokine chemicals that are found in inflamed tissue. However, research shows the correlation with chronic fatigue is not consistent.
The association of disease activity is deemed to be secondary to pain, because sometimes you can have high pain levels yet when you look at the inflammatory markers, the disease doesn’t seem to be in a flared state. Pain cannot therefore be automatically associated with disease severity.
Anemia is common in RA and can affect up to 60% of people with the condition. Some research shows a link between resolving anemia and improvements in symptoms, while other research shows fatigue is independent of anemia, with no association at all between low hemoglobin and the onset of fatigue.
Depression is another condition that fatigue can be a symptom of and quite a lot of people with RA suffer from depression.
Pain is also a major symptom that can wear people down and prevent them from sleeping properly, which can cause them to wake up tired. Research shows that about 60% of people with RA regularly experience disrupted sleep.
Pain can also cause fatigue in other ways because when people are unable to exercise, their muscles get weaker which can make getting around, or even getting up from a chair, for example, even harder work.
In summary, there is a complex interrelationship between all of these factors and chronic fatigue is likely to be caused by a combination of them rather than by any single factor.
How does chronic fatigue impact upon a person’s quality of life?
The impact will vary from individual to individual depending on a whole range of factors such as what they do, whether they work or don’t work, how old they are, what their daily responsibilities are and whether they’ve got a young family. All of these contextual factors are an issue and fatigue will potentially make holding down a job difficult.
Some people in the survey have said that they lost their job due to fatigue, which can cause difficulty concentrating, for example. It can also limit your social life in a major way, which can lead to isolation and depression. There isn’t really an area of your life that it doesn’t impact on.
Please can you outline the recent survey conducted by NRAS and 2020health? What were the main findings of this research?
The survey was conducted among NRAS members but also a much wider, non-member audience through our social media.
Over 2,700 people took part in the survey, of which just under 2,000 fully completed the surveys. Chronic fatigue was experienced by 89% of the respondents and 98% of those said it had impacted on their life during the previous seven days.
94% said their episodes of fatigue lasted either for several hours or all day; 57% said the fatigue actually appeared before they were diagnosed with RA and 76% felt that the public was not at all aware that chronic fatigue is a symptom of RA.
Of working-age respondents, 71% said they were unemployed and that chronic fatigue contributed to them not being able to work and 24% said they’d had to change jobs as a result of their chronic fatigue.
Of those in employment, 23% took more than 10 days off in the last 12 months due to fatigue and 49% said their line manager hadn’t made any suggestions to help them better manage their fatigue in the workplace.
Chronic fatigue is also having a significant impact on mental health, with 90% of respondents saying it caused them to feel down or depressed during the last seven days, including 78% who said they felt very down or depressed.
It’s also having a big impact on relationships, with 70% saying fatigue prevented them from taking part in activities with their families or their partners and 54% reporting a negative effect on their sex life.
Chronic fatigue is not being well-managed by healthcare professionals. 66% of respondents said their healthcare professional either never or rarely asks them about the effects of chronic fatigue and 79% said that their healthcare professional had never tried to measure their levels of fatigue.
16% of respondents said they had nothing to manage their fatigue and only 2% said they’ve attended any kind of chronic fatigue self-management program. We feel that people with RA do need to get better access to care and treatment that is sensitive to the impact that fatigue has.
Why do you think there is a lack of awareness of fatigue as a symptom of RA amongst the public?
I think it’s because people are generally completely unaware of what RA is. People hear the word arthritis and automatically assume you’re talking about osteoarthritis, which is a completely different condition.
If they’re generally unaware of the disease in the first place as well as its severity, complexity and impact on those who live with it, it’s not surprising that they’re unaware of one of its major symptoms.
Public awareness is something we’ve been pressing with the Department of Health and NHS England for a long time and it actually goes back to 2009 with the publication of the NAO report into RA services.
One of the recommendations from the committee that reviewed the NAO report was that we need a public awareness campaign about RA because it affects a lot of people.
Rheumatoid Arthritis is more common than MS, leukemia and Parkinson’s, all of which the public generally know something about. However, when you talk about RA, people usually jump to the conclusion that you’re talking about something fairly benign that their grandma has. They just don’t understand what it is.
What more needs to be done to raise awareness of the invisible symptoms of RA?
We need a public awareness campaign on RA, which could include messages about key symptoms and the importance of seeking early help if you’re experiencing any of those symptoms.
We know that with RA, there is a ‘window of opportunity’ whereby, if you are diagnosed within 12 weeks of symptom onset and started on treatment within that period, you have a much better chance of getting your disease under control and getting it into remission or into a low disease activity state than you do if you wait months and months and go from pillar to post before the right person gives you a diagnosis.
We know that the biggest delay in people seeking help with this disease is people themselves not recognizing that the symptoms they’re experiencing need urgent attention. The reason for the public awareness campaign is to get people diagnosed earlier. Ultimately, that will save the NHS money.
Data that exists within the ERAN (Early Rheumatoid Arthritis Network) research network shows that in the UK, the average time from symptom onset to diagnosis and treatment initiation is about nine months. During that period of time, you can get irreversible joint damage, which can lead to the need for surgery and, ultimately, to disability, so it is important to us that we get people diagnosed more rapidly.
How is fatigue measured and how frequently should patients have their levels of fatigue measured?
There are validated fatigue measures which have been developed and used in some areas. The team in Bristol, in particular, have done a huge amount of work that’s internationally recognized in this area and has been widely published.
The Bristol fatigue scale is actually used within our survey. In our view, it would be possible to measure fatigue at each follow-up visit in much the same way as health professionals should be measuring pain, although I don’t actually think they’re measuring pain regularly enough either.
It’s about getting health professionals to understand just what an impact fatigue has on people with RA and actually getting them to ask about it on a regular basis at follow up appointments.
What resources do you think need to be put in place to help healthcare professionals deliver improved care?
I don’t think it is so much about additional resources. It’s about empowering patients to raise the issue of fatigue and enabling them to understand that it’s not them being weak or feeble, but a normal part of the disease. This is something that we do through our website, publications and as part of our RA management program.
It is also about health professionals in rheumatology being more understanding of the impact chronic fatigue has on their patients’ lives and asking the right questions.
Pain and fatigue are often linked. It’s certainly my experience that when my disease is more active and pain levels are higher, my fatigue is worse. I think measuring pain and fatigue on a regular basis and taking action if these are not generally under control is key.
There are certainly a lot of messages within our report for health professionals and this was a very large survey. We are going to get that information out to rheumatology health professionals across the UK, and we will be encouraging them to read it and take action.
Within the multidisciplinary teams, we need to be asking our patients about their fatigue levels, which we need to be measuring as well as measuring pain. There is not enough emphasis on the need to measure fatigue and pain in the national NICE guidelines, something we are planning to look at when we come to review those guidelines.
What are NRAS’s plans for the future?
Around this subject, we certainly intend to publish the Devolved Nations’ statistics in Scotland, Wales, and do some policy work around that.
We also intend to produce a booklet on fatigue in 2015 as we believe that this would be incredibly helpful. We know how popular our current short information sheet on this subject is and so we plan to do something more in depth next year which we feel would also give health professionals an additional tool to help support their patients.
Where can readers find more information?
If anybody would like more information, our website address is nras.org.uk and our helpline number is 0800 298 7650.
About Ailsa Bosworth
Ailsa Bosworth is the Founder and Chief Executive of the National Rheumatoid Arthritis Society which she launched in 2001 following a 6-month battle to get Anti-TNF treatment. Ailsa has had sero-negative RA for over 30 years. Ailsa’s background is in business management and marketing in the fields of engineering, computing and audio visual services.
In a relatively short time Ailsa and her team have established this award winning charity as the campaigning voice in the UK for people with Rheumatoid Arthritis (RA) and NRAS now employs 27 staff.
Ailsa contributes at a national level to NICE Technology Appraisals, British Society for Rheumatology Guideline Development Groups and the BSR Biologic Registers. She has contributed to both the NICE RA Guideline published in 2009 and NICE Quality Standard in RA published in June 2013.
She was Joint Chair of the Rheumatology Futures Project Group which was responsible for commissioning the King’s Fund Report into RA and the subsequent inflammatory arthritis commissioning pathway.
Ailsa also contributes to European standards through the European League against Rheumatism (EULAR) and NRAS supports a huge amount of clinical and academic research in the UK and is a Patient Research Partner with OMERACT.
Ailsa is a key member of the Rheumatology Commissioning Support Alliance. The Alliance comprises NRAS, the British Society for Rheumatology and Arthritis Care, through which the powerful combination of clinicians (including allied health professionals) and patients can advise and influence commissioning to the ultimate benefit of patients through improved commissioning and delivery of quality care.