UK: Human Resources Grapevine Podcast: From Long Covid to ME

[Sly Saint]

From May 2023

In this episode we look at the topical and ever-present issue of Long Covid in the workplace. Reports are now suggesting that people diagnosed with Long Covid for more than 12 months are having their diagnosis changed to Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). There’s growing evidence that there are many crossovers between these three conditions, which may all be defined as post-viral fatigue syndromes. Around 17 million people worldwide have ME/CFS.* And around the same number of people have Long Covid in the World Health Organisation European region.** Add to that the fact that around 2 million people in the UK alone have now had Long Covid for at least 12 months, and that the majority of those are of working age, and the case for employer support becomes very clear.

*** To help talk us through the overlaps between Long Covid, ME and CFS and provide an overview of what good support looks like, we’re delighted to be joined by Beverly Knops, Executive Manager and Specialist Occupational Therapist at Vitality360, a persistent pain and fatigue specialist and one of Generali UK’s valued early intervention partners. Putting the questions to Beverly today will be Kay Needle, Generali UK’s early intervention and rehabilitation expert.

https://www.generali.co.uk/Media/Podcasts.html

article and partial transcript here

Around 2 million people in the UK alone have had Long Covid for more than 12 months, according to latest data from the Office for National Statistics. And the majority of these people are of working age. In other words, Long Covid is having an ever-growing impact on the workplace.

Reports are now suggesting that some people diagnosed with Long Covid for more than 12 months are having their diagnosis changed to Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS) for short; a long-term condition, also often triggered by an initial viral infection. ME/CFS would likely meet the definition of disability under the Equality Act 2010, unlike Long Covid, which doesn’t; not yet at least.

So, what should people watch out for when it comes to diagnosis? And what can employers do to help ensure work is viewed as part of recovery?

In our latest #Wellbeing360 podcast, our early intervention and rehabilitation expert Kay Needle puts these questions – and more – to Beverly Knops, Executive Manager and Specialist Occupational Therapist at Vitality360, a persistent pain and fatigue expert and one of Generali UK’s trusted early intervention partners. Here are some of the excerpts from that interview.

https://www.hrgrapevine.com/content...mployer-support-generali-uk-employee-benefits

 

[Trish]

My heart sank when I saw it was Beverley Knops being interviewed as an ME/CFS expert. She was co author of a dreadful recent book on ME/CFS that I reviewed where they made light of the symptoms and gave a stupidly upbeat view of outcomes and promoted return to work.

So here she does the same:

Kay: Can you give us an overview of the similarities and differences between Long Covid and ME/CFS?

Beverly: We’ve been seeing people for many years in our clinics with post viral fatigue syndromes or ME/CFS. So, let me describe these first. Around 50%-75% of people with ME/CFS will be suffering from debilitating fatigue. That’s fatigue that’s stopping them from doing their normal day-to-day activities. They’re usually also experiencing unrefreshing sleep. So, they may sleep but that sleep is likely to be disrupted in some way, so that when they wake up, they don’t feel like they’ve slept.

They’re also experiencing cognitive dysfunction, or cognitive fatigue. So, people could present physically quite well, but their brain function is impacted; their ability to memorise things, to recall and process information, to multi-task. These abilities might all be affected.

We’ve also seen people with something that’s called Post-Exertional Symptom Exacerbation. That means that whatever the exertion – be it physical, social, cognitive – other symptoms are exacerbated, and they feel worse afterwards. The fatigue might be worse, but some people also present with a flu-like illness.

There are lots of other potential symptoms too, from feeling light-headed, faint and nauseous to digestive issues.

So she dismembers the NICE definition of ME/CFS, suggesting only some of us have each of the core symptoms and making them sound much less severe than the reality. It suggests to me she only sees people with the mildest ME/CFS and probably some misdiagnosed.

The section on return to work and workplace adjustments is again geared to the mildly affected. It sort of sounds understanding and helpful with all it's listen to people and make them feel valued stuff, but then you get things like:

Overall, I think it’s about looking at this positively all the time. Not what can’t the person do, but what can they do. Can they do two hours of work, even if that’s 40 minutes, then taking a break and doing another 40 minutes? What can they contribute in that time that’s useful, for their own recovery, for their confidence and for their employer.

It’s about not always thinking that extended time off is the answer, but for all parties to understand that the person might need to pull back for a day or two.

But with Long Covid and ME/CFS, you need to spread that out, so that people start on just a couple of hours and have time to build up their confidence and capacity.

Always the emphasis on being positive, upbeat, work is good for you as part of your recovery etc.

 

[Sly Saint]

Beverley Knops

"Beverly Knops. Executive Manager and Senior Specialist Occupational Therapist Vitality360 . DipCOT, MRCOT, MBACME ... "

 

[Trish]

BACME website:
https://bacme.info/people/beverley-knops/

About Beverley Knops
Specialist Occupational Therapist DipCOT, MRCOT, MBACME. Vitality 360.
Beverly has been qualified for over 30 years and has vast experience in pain and fatigue management and in training others. She works part time within the North Bristol NHS Trust, working in both pain management and fatigue management clinics. Alongside this she manages Vitality360, a rehabilitation company also specialising in Pain and Fatigue. She is particularly interested in supporting people in retaining and returning to work where this is a realistic goal. Beverly has been an integral BACME board member for many years and her contribution to the organisation is extensive.

I suspect most of Vitality 360's work comes from employers wanting to get their employees with fatigue, pain and ME/CFS back to work quicker. Maybe she does a good job with the most mildly affected who are able to work, but her book had nothing to offer for anyone else.

 

[Lou B Lou]

And we are supposed to be trusting BACME now??? Not on your Nellie. Vitality 360 is the same old Sh*t - conflate non specific fatigue and insomnia with ME - and sell the misinformation to employers.

We should be light years beyond that nonsense now.

As I have limited years on this earth at this point (age) it's making me even more fearful for my future that 2 years after the new NICE Guideline that opportunists are still exploiting the 'ME = fatigue/tiredness/symptoms common in the general population' BS.

At my worst (well, at 70% of my worst, because at my worst I was not conscious or capable of any thought or movement at all) I used to reflect how totally horrific it must be for children with 'whatever it was I had' - and also reflected how difficult life must be for elderly people who were as frail as I was.

Now I am in actual fear of eventually having to go into a care home - and being chivvied/bullied to be more active than I can be. For many ME sufferers sitting up at a table to eat is either impossible or a form of physical labour so hard it may as well be punishment. And I have no hope that care home management or staff will be educated about ME enough to not be a danger to me. I am not there yet. Frankly I never want to be in that position again - being so sick and helpless and dependent on clueless carers, or no one, as it was for the first 2 years of illness).

It seems there has been no progress in the 30 years I have been sick - and we can't survive on hope. Why the hell should we?

 

[Fainbrog]

I was required to engage with V360 as part of my Income Protection award and to be fair, my experience overall was positive - despite my concerns going in.

I had 3 Zoom sessions with Beverley Knopps (the assessment was split at her suggestion so as to minimise the impact on me), who was very pleasant, listened to my history and made various practical suggestions about management approaches/techniques. We discussed up front, my concerns about having been referred to them, including a very frank conversation about CBT/GET (as this was just as the draft NICE GL had been released) which were never mentioned again.

At the end of the assessment, she said, it was clear I wasn't able to work, which would be the report going back to the insurer (at which point I had a little weep of relief) and that other than counselling, there was nothing they could really offer me. I was then referred to a counsellor, who I spoke to every few weeks for about 18 months, which was really helpful in coming to terms with the life changing illness that ME is and developing/refining management techniques - challenging my views of what I could do and reducing activity levels rather than increasing them.

At no point in the best part of 2 years I was under them, did I feel any pressure to return to work (other than the pressure I was putting on myself), do anything that wasn't in the best interests of my health and well-being. It was made clear to me early on that my employer wouldn't want me back unless I was able to reliably return to work. A lot of which was what I needed to hear.

The reports that they produced every 3 months to the insurer were fair and accurate reflections of my state and engagement, were approved by me before they were sent, allowing me to ask for minor changes as needed.

I could write a book about the Income Protection claim process and the horror story that became (and periodically still is), but the V360 experience, including dealings with Knopps, for me at least, an informed patient in the early stages of my illness, was broadly speaking, positive.

 

[Trish]

That's good to hear, Fainbrog. I wonder why Beverley Knops was willing to put her name to such an awful book, given your experience. I did get the impression that the worst parts were produced by the other author who is a doctor and whose tweets came across as arrogant.