The ME Association: ME/CFS and Long Covid at the Disability employment inquiry

The ME Association was invited to take part in the Disability Employment Inquiry by the Work and Pensions Committee last week, and we felt it was important to try and give a voice to people with ME/CFS and Long Covid.

By Russell Fleming, Head of Communications.

The inquiry I was invited to took place on Wednesday, 15 May, and it was my first time appearing before such a committee. I sincerely hope my efforts have at least ensured that ME/CFS and Long Covid remain on the government’s radar.

The committee was focused on ‘barriers to work’ which is not an easy subject to talk about when we know that so many people in this community are unable to work even though they are highly motivated.

I tried to focus my testimony on the pressing need to improve healthcare services before anything else, and to implement the NICE Guideline’s recommendations on ME/CFS across the UK which I said I hoped would be helped by the Department of Health and Social Care's Delivery Plan.

  • For example: If an ME/CFS specialist service receives sufficient funding to be wholly compliant with the recommendations it should mean that specialists can also provide support when and if people feel able to return to work by liaising with an employer (see recommendation: 1.9).

I was not aware of the questions that I and the other witnesses would be asked before the event occurred. I was briefed but only in general terms. Some of my testimony included reference to my own work experiences which I know will not reflect those of everyone in the patient community.

I felt the other witnesses in my session – who spoke about Multiple Sclerosis, Crohn's Disease, and Mental Health – were excellent and overall, it went very well. I was also pleased at the engagement and questions from MPs. I could have said more but could only answer their questions and didn’t have as much time as I would have liked. But I did my best and hope you feel the same.

I think there is a great deal the charity can do to raise awareness of the value that people with ME/CFS and Long Covid have as potential employees if they are able to work, and of the need to ensure appropriate support is made available to enable them to do so.

We should work with healthcare providers, employers and unions to ensure that when and if a person determines they are ready and able to return to the workplace, they receive the right kind of support and have access to rewarding jobs that they can manage.

But we also need to ensure that when people develop ME/CFS or Long Covid and need to reduce or leave employment, the process is as smooth and understanding as possible.

Because of the often unpredictable nature of these conditions, and because it can be very difficult for us to know in advance if we can sustain a job, I think there should be a ‘safety net’ in place that ensures benefits are not subject to a review as soon as a job is accepted.

We need that reassurance and don’t want to be anxious about having to apply for any benefit again, and potentially being refused, if a job doesn’t work out. I know some of you were particularly concerned that applying for Access to Work grants might trigger benefit reviews and I also raised this point with the committee.

It has been my experience (below) that you often cannot tell if a job will prove too demanding or that you will be considered a ‘reliable’ employee and retained, until after you start work; despite ‘reasonable adjustments’ being put in place.

There needs to be flexibility both in employment opportunities – more flexible working arrangements, more appropriate part- and full-time jobs that we can do – and in the benefits system to better support people with ME/CFS or Long Covid.

For those of us that can, we have an awful lot to offer an employer, but we shouldn’t be pressured into work and work shouldn’t be impossible to sustain.

More information

My own work experience

When I felt the pressures of returning to and keeping my previous career in Private Banking, I made several attempts to return to work before I was able. I think many of us do even if we know it isn't sensible. I have yet to meet anyone who isn't motivated to work.

I remember on one occasion falling to the floor at work and having a seizure (I also have epilepsy but didn’t know it at the time). At other times, I simply left the office in a taxi, because I couldn’t concentrate or had become too debilitated; despite the Bank trying to give me roles that I felt I should be able to do.

These attempts – and others – proved foolhardy but were I think understandable, and in those days, I had no support and was frantic about keeping my job. I didn’t want to let anyone down and I loved my career.

Eventually, after 2 years, I was offered ill-health early retirement from the Bank which I reluctantly accepted. It marked a realisation that I needed to accept ME/CFS for what it was – a serious illness that I had to learn to manage.

My mental health was affected badly. My life as I knew it was over. I entertained myself by thinking if only I could get better than I could return to the Bank, but of course I didn't get sufficiently better.

It took me a very long time to realise that my life did still have meaning, and even longer to believe that I could get a job that might be completely different to my former career but could have meaning too.

There’s a saying: ‘aim small, shoot small’. It became my mantra for both managing ME/CFS and trying to create a new life as a disabled person. But like most things, it wasn’t straightforward.

In the years that followed, when I felt able, but again before my body was really ready, I tried several different jobs in my effort to return to work. I thought I was allowing for my reduced work capacity by accepting positions that were well below my former skill set.

These jobs didn’t involve long commutes. The skills needed were I thought achievable. But one thing I failed to consider was the massive demand on my cognitive and physical abilities. And I don’t think I could have predicted that, until I tried the roles. However, it was incredibly demoralising each and every time.

Looking back over 24 years, the employers I have had have been both helpful and unhelpful. The Bank were extremely helpful even though they (and I) really didn’t know anything about ME/CFS, they did their best to help, and of course they gave me a pension.

Other more recent employers who knew I had ME/CFS were less accommodating. I recall one instance, when working as an administrative assistant for a special needs school, I repeatedly failed to properly balance the dinner money because of my cognitive difficulties. My ME/CFS got worse and I needed time off, but there was very little understanding from the school and I was dismissed at my 3-month probation.

All my attempts to return to ‘normal’ work led to failure. This was even true with College and University. Although I really enjoyed those experiences, I came up short in terms of the ultimate qualification. Again, the physical and cognitive demands – and repeated exposures to ‘freshers flu' – led to relapses and large blows to my mental health. I really wasn’t managing ME/CFS effectively at all.

Time has been a key factor for me. Time helped stabilise my symptoms and allowed me to better understand my body and how it responded to ME/CFS. I started writing for patient forums, reporting developments on social media, and worked with a local charity here in Cornwall.

It wasn’t until I joined the ME Association and worked my way slowly from volunteer to part-time and more recently to full-time that I have been able to sustain work, although as an employer the charity is very supportive.

I now work remotely from home and can work flexible hours when I need. My team all have ME/CFS as well and also work from home. We work very well together, I think.

I have a lot of home support in place that allows me to focus my abilities on work. It’s my choice to do that. I know I sacrifice a social life, there are still times when I can’t go outside, and I rely on others to do the kind of everyday tasks that I still can’t manage.

But this is what I want, and I am lucky enough to be able to do it, despite ME/CFS. Of course, the shadow is always present: ‘what if you can’t manage to work anymore?’ I just keep praying that doesn’t happen anytime soon…

Russell Fleming
Head of Communications. The ME Association.

Shopping Basket