ME/CFS facts to help with employment

A

arewenearlythereyet

Senior Member (Voting Rights)
Hi

I’m currently negotiating with my employer and formalising reasonable adjustments. I’ve taken a look at threads here and not surprisingly there is very little about employment so I thought I would start with this thread in case it helps others.

it’s deliberately left a little vague but the general gist is to collect evidence (like prevalence stats etc) that could help argue that:

  • ME/CFS is a disability i.e permanent and impacts everyday life
  • ME/CFS is a fluctuating condition
  • ME/CFS typical symptoms that require adjustment at work (difficult but thought I would try)
  • Comparisons to other conditions/hidden disabilities
  • Examples of adjustments that should be considered
I will keep a running summary of what we come up with on the next post

thanks in advance for contributions/thoughts
 
I’ll start by posting the draft nice guidelines

https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline#page37

this has a section on managing flares and relapse on page 37 I’m considering using this terminology and referencing it to my employer but what sort of adjustments could that lead to?

sick leave
Temporary reduction in duties
Unpaid leave

key thing here is finding stats to explain how frequently this would need to be accommodated. I’m not sure if there is a study that describes this?
 
NelliePledge said:
I think there will be some useful material on ME association what is ME on the website - it is based on the purple book

https://meassociation.org.uk/about-what-is-mecfs/
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Yes it’s got quite a bit on general prevalence. The thing I found frustrating is it doesn’t really help on employment issues ...it’s more about PIP and explaining why people can’t work.

I’ve had to avoid a lot of their literature because of the way it is pitched otherwise I may convince my employer that I am unable to work.

this leaflet was the best I could find to explain the nature of ME, but it’s fairly general in nature;

https://meassociation.org.uk/wp-content/uploads/MEA-M.E.-Factsheet.pdf

Action for me has a better pitch here for employment:

https://www.actionforme.org.uk/uploads/pdfs/me-and-work-2016.pdf

the text has been updated but unfortunately some of the links it refers to talk about graded exercise :banghead: this means I haven’t been able to use it


If anyone can recall any specific nuggets on either sites that they have used or think is useful for the above be grateful. There is so much content there and in the main I found I wasted hrs and only came up with the leaflets attached. There is an employment leaflet on the MEA that costs £3 but I’ve not read it to know if it’s worth purchasing.
 
arewenearlythereyet said:
I’ll start by posting the draft nice guidelines

https://www.nice.org.uk/guidance/gid-ng10091/documents/draft-guideline#page37

this has a section on managing flares and relapse on page 37 I’m considering using this terminology and referencing it to my employer but what sort of adjustments could that lead to?

sick leave
Temporary reduction in duties
Unpaid leave

key thing here is finding stats to explain how frequently this would need to be accommodated. I’m not sure if there is a study that describes this?
Click to expand...

Some things I had as reasonable adjustments over the years (gradual onset ME meant I was undiagnosed for at least 7 years and I retired early 3 years after ME/CFS diagnosis)

1 reduction of hours (and pay) to 85% of full time which I worked over 4 days with a day off on Wednesday
2. Periods of long sick leave some at full pay some at half pay
3. No travel for meetings - all by phone
4. Working from home most of the time. I only went in to the office once a month to log in there as the IT didn’t do all of the security upgrades remotely.
5. return from sick leave on reduced days/hours starting low and attempting to gradually increase to find a level i could sustain
6. Temporary Change in work responsibilities so I supported other managers rather than leading projects.

Eta just tweaked to make completely clear reduced hours also meant a pay reduction.

the downside of this was because everyone at my level worked more than their contractual hours and no overtime was available (limited time off in lieu) I had to be very very organised and strict to make sure I actually got my non working day. Also I was still travelling at the time so some weeks with some very long days even over 4 days I was working full time contracted hours for 85% pay. At this time I was undiagnosed with MECFS I suspect if I had diagnosis both I and my managers would have been stricter. Not surprisingly when I had a year doing a role that was less demanding my health was better because I did stick to the reduced hours.
 
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Oh gosh yes that AFME booklet was what I used because I didn’t know any better. I remember the example in there of flexibility was someone who worked for a senior manager in a big organisation and was allowed loads of flexibility way above what I got and I was very lucky, didn’t seem realistic to hold that up as achievable for 99.99% of PWME
I haven’t read the revised version but I think if the revision is anything like the one they did to the pacing booklet it falls rather short of the complete rewrite needed.
 
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arewenearlythereyet said:
Examples of adjustments that should be considered
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I wondered if there are things here that become easier with 'the new normal' such as more working from home which can be easier in the removal of travel time and effort and also more suitable seating including things like working lying down. I think employers are more understanding of home working these days. But things like good (wireless) headphones can make a huge difference in meetings.
 
Things that helped me:

  • Having my overall salary reduced by one week's pay to give me an additional week's leave. It allowed me to use a 'half term' pattern so that I never worked more than six or seven weeks without a break, and I was able to adjust to the salary reduction easily as it was spread over the year;

  • Two appointments with an occupational health specialist, paid for as part of an Access to Work grant, to enable me make my working environment as helpful as it could be;

  • Working some of my hours at home, also negotiated via the OT;

  • Swapping a few small responsibilities with a colleague, which better fitted our individual aptitudes. We often did this informally anyway, but we eventually wrote them into our job descriptions.

Things I would have tried to negotiate if I hadn't been so unwell at the time with undiagnosed B12 deficiency on top of ME:

  • Doing 90% of my work from home, which was perfectly feasible for everyone;

  • Extending my working day over up to 14 hours, in a do-a-bit-then-have-a-rest pattern (I did this when working at home, and it was really helpful without impacting colleagues at all);

  • Not attending the 40% of meetings that were actually unnecessary for everyone, and only stayed on the schedule because 'we'd always had them';

  • With the agreement of colleagues, a full review of inter-departmental job descriptions and functions, as some of them had evolved over the years in unplanned ways. As well as a disabled person who found some very basic tasks (e.g. traipsing round the building) quite hard, there were a number of long-standing staff members who, although highly skilled and committed, were also in a bit of a rut and would have enjoyed rethinking the way we did some things.
 
Adrian said:
I wondered if there are things here that become easier with 'the new normal' such as more working from home which can be easier in the removal of travel time and effort and also more suitable seating including things like working lying down. I think employers are more understanding of home working these days. But things like good (wireless) headphones can make a huge difference in meetings.
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I can only speak for my employer but I would say it’s split. Some members of the board believe adopting a blended approach post lockdown is the best option, others want everyone to come back to the office. I think the genie is out of the bottle though so I’m with you ...some sort of mix is likely. This will make things a lot easier I think.

one thing I have noticed personally is that pacing meetings online is just as important as physical meetings ...you use a bit more energy because you can see all the faces moving and changing their expressions all at once. The sound and visual part is also more challenging with funny odd noises, cutting out etc so you need to concentrate more. I find chairing meetings a bit easier than being a participant bizarrely ...I suppose since I’m keeping them in line (as if). I still avoid back to back meetings on teams and try and limit them to half an hr . If I go over my limit I find talking in the phone 121 less draining.

The good part to working from home is being able to rest with your legs up. Downside for me is that the only practical place for my desk is in the cellar so I have to climb more flights of stairs in the day to go to the loo etc than I do at work which has a lift. My work also has air conditioning so in the summer this feels like a better option, particularly as it’s only a 6 min drive from my house. For me working lying down is impractical due to the all over muscle pain I have constantly ...I’ve already got a permanent neck ache due to my eye prescription changing over lockdown (peering through the wrong part of the varifocal...imagine a strict teacher looking down their nose) and not being willing to go to the opticians. I prefer an upright ergonomic chair which work has provided for working at home.

I think having flexibility work or home is definitely key tailored to the individual/circumstance considering symptoms, physical exertion, temperature regulation, resting facilities and cognitive demand?
 
A slight red herring, but it should be noted that reduced hours might impact on any pension if you are later forced to take ill health retirement.

In the 1990s my work agreed to me working half time, following several meetings with occupational health consultants. I was working for the UK NHS, this worked really well for three or four years in terms of stabilising my health, though we had various disagreements on days worked (two and a half days each week, three full days a week with every sixty week off or three shorter days a week).

For me the only problem arose later when a significant relapse forced me to stop work entirely. The subsequent early ill health pension was reduced because I was only working part time when I had to retire.
 
arewenearlythereyet said:
one thing I have noticed personally is that pacing meetings online is just as important as physical meetings ...you use a bit more energy because you can see all the faces moving and changing their expressions all at once. The sound and visual part is also more challenging with funny odd noises, cutting out etc so you need to concentrate more.
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I agree – I actually think attending meetings in person is preferable, even though it involves travelling and making yourself presentable in ways that aren't so necessary at home.

You also have the pleasure of spending a bit of time with people and catching up with snippets of news (both personal and work related) before the meeting starts, which becomes more important the more you work remotely. Online, as well as being more stressful, doesn't give you these benefits.

Peter Trewhitt said:
A slight red herring, but it should be noted that reduced hours might impact on any pension if you are later forced to take ill health retirement.
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This has impacted a relative's pension permanently, and if she weren't married to someone still working full time, she'd have had to make some major adjustments until she was old enough to draw her state pension.

Didn't affect me at all, since the words 'pension' and 'ill health retirement' are barely known in the arts! I was never going to have more than working age benefits followed by the state pension, so it was very much easier.
 
Where employees with ME do need to come into the office, even if it's just for the odd day, then their working environment can make a massive difference.

I don't know if there's anything that spells this out though.

Here's a list of the type of things I mean -
  • Being placed in a quiet corner (most people won't have their own office), balanced with the need to reduce the walking necessary to go to the loo, get drinks of tea or water.
    • Not surrounded by the sound of other people making phone calls all around them
    • Not near a typical gathering point or walkway where there's lots of background chat
    • Not too close to photocopiers and printers and other equipment that creates noise.
  • Chemical or sense of smell
    • Not placed too close to printers or photocopiers because of the odour of hot plastics and inks
    • Not too close to loos or kitchens, balanced with the need to access those areas because those places are most likely to be cleaned with scented chemicals.
    • Not too close to other members of staff who might be wearing scented deoderants, aftershave and perfumes.
  • Air vents
    • Being situated in areas with direct airflow - be that from doors, windows, exhaust from large printers or air conditioning vents can be extremely uncomfortable and unpleasant and is far more noticeable to someone with ME.
    • On the other hand some pwME might work better close to a fresh air source, like an opening window.
  • Lighting
    • The position of the desk and lighting available has a massive impact on concentration and stamina.
  • Rest periods
    • The ability to go somewhere quiet and dim and lie down just in case. When I was in our own office building my line manager let me borrow his office to lie down and rest if I felt a migraine coming on. It was an informal arrangement in my case -he was a sufferer himself so understood.
  • Pacing
    • There will.always be emergency situations but some understanding or recognition that you simply cannot do back to back meetings without loss of function would be useful.
    • Sometimes meetings drone on and most people are sitting there bored to tears as things not strictly relevant are discussed. An agreement that once your bit is covered that you can quietly & discreetly leave when your bit is done with the meeting chair would be useful.
  • Travelling times
    • Travelling in rush hour / at the busiest times eats into a lot more of our resources than travelling when it's quieter, this impacts on stamina and concentration levels through the day. If possible, being allowed to come to the office either later or earlier (later is probably better) would help.
 
I think the meetings in person or in the office definitely depends on your organisation. I worked in a large organisation my team were based in various U.K. locations so we did a lot of our business by teleconference anyway. Being in the local office didn’t bring me work benefits. For face to face meetings I would have exhausting long days travelling to London or Manchester away from home 12-14 hours.

also at home I could take breaks to lie on the sofa

when I was really struggling before getting diagnosed for some morning teleconference meetings I definitely dialled in on my blackberry while still in bed.
 
If you don’t live too far from your office and able to drive if there’s parking considering asking for a space. Maybe involved if they say you have to have a blue badge and you haven’t got one. I was on a parking rota as spaces were limited but because I only went in occasionally I could always get a space.

Again if you’re reasonably near the office getting a taxi might be a good option to save energy driving and it could be worth seeing if Access to Work can still help with that I was aware of someone who got funding from them a few years back.
 
arewenearlythereyet said:
one thing I have noticed personally is that pacing meetings online is just as important as physical meetings ...you use a bit more energy because you can see all the faces moving and changing their expressions all at once. The sound and visual part is also more challenging with funny odd noises, cutting out etc so you need to concentrate more. I find chairing meetings a bit easier than being a participant bizarrely ...I suppose since I’m keeping them in line (as if). I still avoid back to back meetings on teams and try and limit them to half an hr . If I go over my limit I find talking in the phone 121 less draining.
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I find zoom meetings worse than physical ones in terms of energy usage. But it may just be that I have more meetings. With zoom you don't need to be on the camera all the time. Some meetings I go to people will turn the camera on for parts (when they are more involved and off when just listening) and that can help.
 
Adrian said:
Some meetings I go to people will turn the camera on for parts (when they are more involved and off when just listening) and that can help.
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Definitely.

IM and I recently had to have rather a long meeting over the phone. It was an official thing & involved a rather complex situation. We had plenty of notes prepared beforehand & that helped enormously. Having an agenda & keeping to it really does help.

Interesting that although it wiped me out cognitively, it was less taxing than a facetime phone call for a chat with someone I didn't know from a local ME group that didn't last half as long.

Even though I was sitting in bed for both.

Managing your own facial expressions and reading other people's seems to burn through a lot of energy.
 
arewenearlythereyet said:
Comparisons to other conditions/hidden disabilities
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This can be a sticky one, but my feeling is that it's better to use examples that a range of people would understand, and not get too tied up with ME politics.

For instance, we talk a lot about fatigue and fatiguability, but people without ME are likely to be much more familiar with the former. So in general terms, I'd usually talk about fatigue; fatiguability came in only if I needed to focus on a specific example, e.g. why climbing stairs is difficult/impossible.

I also only discussed symptoms that people saw and were aware of, which in my case were usually pain, fatigue, mobility, sensory issues, and cognitive difficulties. Choosing the main work-related challenges in your particular case can help you find comparator illnesses that are more familiar to people, as well as making you sound less like a hypochondriac!

  • For fatigue, cancer and MS seemed to be the most comparable and familiar. (I also tied the cognitive problems to fatigue, as I think they'd have been concerned if they'd known the extent of the management strategies I had to use!);

  • For sensory issues, high functioning autism – of which I have a diagnosis anyway;

  • For mobility issues I might occasionally use MS, but my difficulties were pretty obvious;

  • For chronic pain I didn't really require comparators, as there was usually someone involved who'd experienced pain themselves for an extended period.
 
Kitty said:
For instance, we talk a lot about fatigue and fatiguability, but people without ME are likely to be much more familiar with the former. So in general terms, I'd usually talk about fatigue; fatiguability came in only if I needed to focus on a specific example, e.g. why climbing stairs is difficult/impossible.
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Maybe my situation was different as it was so long ago but the whole fatigue thing was a big problem for me and a real barrier to being taken seriously. Comparing to MS or cancer when those aren't the diagnosis you have may not be helpful.

My companies OT was all about the generics of fatigue clinics and sleep hygiene and do all those and that's you fixed.

The cognitive & all.other issues were then perceived as secondary to fatigue when, for me at least, it's the other way around.
 
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