About M.E.

(Updated 5 March 2025)

I originally wrote this page in (or maybe even before) 2022 but have since updated it a few times to bring it up to date. 

I have been diagnosed with Diabetes and ME/CFS.  A Doctor at my local GP practice did say I also have Fibromyalgia but I believe he didn’t have sufficient knowledge of the two conditions and equated the pain component of ME/CFS with Fibromyalgia.   This view appears to be shared with the doctor with specialism in ME/CFS that I spoke to in December 2024.

The diabetes is less of an issue to me in daily functioning,  although it is becoming more difficult to balance my blood sugar these days, so this page is about the ME/CFS.

It has taken some time to get a formal diagnosis of ME – but sometime mid-late 2023 I was told by a doctor at the local GP practice that I have ME/CFS.  In December 2024 I had an online assessment with the Leeds ME/CFS service who said that my symptoms match the pattern for being considered to have ME/CFS.

From this point I will refer to this as ME, and not ME/CFS.   The NHS used to label this CFS/ME, but in recent years has reversed this as ME/CFS.  I think the reason for this reversal is the fact that many people living with this condition hate the name CFS (Chronic Fatigue Syndrome).   This is because when non-suferers hear this they cannot comprehend what this means and they just consider you someone who is “easily tired”.   I cannot tell you the number of times I have heard “Oh yes, I get really tired too!”.  This minimises the difficulty of this condition and completely ignores many aspects such as pain and cognitive dysfunction among others.   However the NHS also doesn’t like the term Myalgic encephalomyelitis (ME) as this basically means “Painful inflamation of the brain and spinal cord”.   There is insufficient evidence that there actually is an inflamation of the brain or spinal cord so this name is not technically correct either (or not evidenced at least).  There has also been moves to rename it as Myalgic encephalomyopathy – indicating a disease as opposed to an inflamation.  This mostly points out that there is significant debate on what this should be called.  However, the most commonly acceted term in use by sufferers (at least in the UK) is ME so this is what I will use in this document.

For some time I was “self-diagnosing” this rather than just waiting to see and that was due to the way people are often diagnosed when they have ME.   Far too frequently they are misdiagnosed.  Often a diagnosis of depression is given, which may fit some of the symptoms but not all of them.   Even when they are correctly diagnosed, this can be a terribly slow process and they are often referred to therapy that can make their condition worse.  My own experience was very “wooly” and vague – not really giving me any direction of help – just blood tests – no useful results then “end of the line” until I make another appointment.   There was no “process” followed by my GP to pursue anything beyond the immediate appointment.   Fortunately the updated 2021 NICE guidelines rule out Graded Exercise Therapy (GET) as a pancea for ME/CFS as this has been shown to more often cause harm than good.    I am aware that it is still in use – sometimes with more sensitivity to PEM than others – but at least it is not now used as a tool to “fix everything”.  They also say Cognitive Behavior Therapy (CBT) should not be considered a cure, although it may sometimes be beneficial in managing mental health consequences of living with the condition, as with any chronic condition.  Interestingly a doctor with specialism in ME I spoke to in December 2024 indicated that she doesn’t believe that these tools are useless for ME – but that they often have been applied badly in the past for ME patients. I remain unconvinced that an ever increasing platau can be reached by gradually increasing activity and then keeping it there until you are able to do it more – then increasing it again is workable in the majority of cases.

As there is currently no cure for ME but management is really learning to deal with each symptom and manage your life around these, If I was wrong when assuming this was ME, but it turned out not to be, I would have done no harm.  If I was correct, then I will have prevented harm by being careful.  As it turns out – I was correct.  Initially in late 2023 with my GP saying they believed my symptoms were consistant with ME, and then confirmed by a doctor with specialism in ME in December 2024 that she was satisfied to consider my case typical of ME.

Before I list the main symptoms I experience, I should say a bit about how this is now affecting my daily life.   I am still working full time as an IT Manager.  However this situation cannot be described as “normal”.   I am still working from Home as are a some of my colleagues.  I’ve been home based (with the occasional trip into the office) since early 2020 when COVID hit the news.   Due in the main to my diabetes, my line manager sent me home some time before we were forced to move everything online and all staff forced to work from home.

Working from home has really helped me.  Not having to spend the time getting ready to go out, driving to work (even though its a really short journey), parking, walking down to the office cuts out around 2 hours of my working day.    This definitely makes the day more doable for me.  Unfortunately the line manager I had who was really supportive has now left.  Since then there have been others as interim’s but a new permenant head of department has only just started in the last few weeks so I will have to see how that works out.  So far he has seemed very supportive.   While the temporary heads of department have been supportive, they have not been as  supportive as the one I had when I first made this page.   When he was here, he would sometimes just tell me to go lie down if I need to etc which really helped.  I could only do this because I am working from home.   I sometimes need long lunch breaks and make up the time at other times like weekends etc.  Of course I have no knowledge of how understanding and helpful each interim would be, and what the new permenant head of department will be like when he starts which has caused and is continuing to cause me significant stress which adds to my symptoms!

If I was working full time in the office, it is clear to me that I would not  be able to cope.    When I have been into the office recently – just being in the loud office caused me pain and anxiety.  If I had to go back to the office I would need a quieter location to be than the main office due to the noise – which would probaly mean me being put some way away from everyone else thus negating any benefit from being “back in the office”.  If I was in the office every day I think I would have had to at least reduce my hours (affecting my pension) or more likely be on long term sick now which would mean being put through capability procedures and then being sacked.

Even with working from home, getting through my work day does come at a high cost.  I spend most evenings simply recovering from work so I can do it all again the next day.  Weekends are pretty much the same – recovering from the week – often spending a large proportion of the weekend in bed.   I start earlier in the mornings than I used to so I can have a longer lunch and finish early as my afternoon cognitive ability is far reduced.  However even with this, by Thursday I am able to do far less than I am on a Monday.   Spending time with family is challenging as everyone in our family is “enthusiastic” and can be intense at times.   Intense social interactions can send me into a panic attack and loud noises cause me physical pain, so even this is a problem for me now.

As it’s possible we will at some stage be told we all need to return to the office (this seems to be up to each head of department so still up in the air if/when this will happen), I am living in constant concern that this will happen and make my work an untenable position.  In 2023 I had an occupational health assessment which made recommendations that were discussed – and mostly dismissed by senior management.  The only one – maybe unofficial – positive thing here is I have been told that I along with someone else are noted down as needing to work from home – so maybe there will be a reprieve there even if the new head of department wants everyone in.  At the moment there would not be the space for everyone to be in anyway – so that probably helps too.

If I was asked to come into the office more (2+ days a week), I would request an occupational health review first regardless as I would be claiming that I need to be able to work in a quiet environment as I can’t deal with a loud office.  If that means working somewhere quiet in the basement then I am away from the rest of the department anyway so what would be the benefit of me being in the office?

The “cards” Below are my current (non-exhaustive) list of symptoms and how they affect my life.   I often find that when I tell people, I miss things off, so I have now started writing them here and amending as things change or I find better ways to express myself.

I’ve tried to put these into the same categories that NICE use in their guidance (NICE Guidance for ME/CFS Diagnosis and Management – October 2021).

Fatigue has been the main symptom although pain and cognitive problems are challenging its top spot!  I am pretty much always tired every day – all day, but frequently have episodes (sometimes several in one day) where the fatigue suddenly becomes debilitating.

At this point I can no longer function.  I start to shake and have palpatations and have to stop what I am doing and lay down.  If I don’t, I will get progressively worse and pay for it severly later.  I am also very likely to make mistakes if I try and carry on when my body is telling me to stop.

I have tried to do some journalling of my symptoms and my health – on this side and most detailed for personal record, but at the end of the day when I am reflecting on what the day has been – I often do not have the energy to even lift the phone.    Lately even listening to a book on my phone has been too much for me sometimes and I need silence – or white noise. 

I get hit with powerful fatigue if I am out and about and even 10 mins in a supermarket is often too much for me and I need to sit down.  I now regularly use an electric wheelchair when in a supermarket.  I still get fatigued but it takes longer and I can “do more”. 

Frequently when doing things that are only really normal tasks, or when I try to do too many tasks, I “pay for it” later, and disproportionally.

This can be physical activity like going for a walk for too long (sometimes even just a short walk when I do not have the energy for it).   I used to regularly go for a 3-5 mile walk before work (around 3-4 times a week).   It was a relaxing walk while I listened to an audio book and no stress.   I haven’t been able to do this for at least the last 2-3 years.   Now, if I try this I am unable to do anything else in the day (and its most likely I would have to give up long before the intended end of the walk), or it may hit me the next day.  This usually means I spent several hours or longer in bed later that day or the next.  Sometimes just a 10 min walk can be too much for me.

However, this can also be mental or emotional activities however. I have had the same difficulty when working on a tough problem at work that I have had to find a way around. On occasion I have pushed myself too far and have managed to get the work done but then haven’t been able to do much for the next day or two. Usually this is overdoing it on a Friday which means spending most of the weekend in bed (which to be honest – isnt much worse than normal for me lately anyway).  In fact – I spend more weekends just recovering form the previous week than anything else.   I have always said I “Work to live” – instead of the (in my opinion unhealthy) philosophy of “Live to work”.   However, unintentially it is becoming reversed for me. I do my best to recover in the evenings and weekends – so I can work again on Monday.

A “crash” can happen if I push past my limits – sometimes by even a very small amount.  The biggest issue here, is that It’s not always possible to know what will be too much.

When I “crash” it is often very sudden, and I usually describe it to people as like someone opening a tap and all my energy bleeds out.  I must stop most things, and everything I can’t stop I have to do in slow motion.  Walking or even standing up is difficult as I lose my balance.  Thinking is wading through treacle, and even talking takes an extreme amount of concentration and frequently my speech becomes slurred.  Ironically, at this point I am so much relying on adrenalyn to just walk and talk that I cant sleep.

Additionally, I have discovered that whenever I have a crash of any significance – I never fully recover.  I would estimate that I recover from the crash with around 95% capacity (energy/cognitive ability) that I had before I crashed.  Obviously this is unsustainable. 

I now have an electric wheelchair which I purchased for our anniversary holiday in June 2024 which has been a real lifeline.   Before if I went to ASDA for example and was there too long it would wear me out for the next few hours – but if I overdid it – it has not been unheard of me to need to take a couple of days off work sick a couple of days later.   Now with the chair I still get tired but it doesn’t often cause PEM so long as I am careful.  However, the chair has its downsides.  Its heavy to get into the car by myself and I never these days feel comfortable going out by myself so usually it means I need to wait until my wife is able to come with me even with the chair.

While I can sometimes sleep during the day for an hour or two, it doesn’t really make me feel much better.  Sometimes it can help with a crash and get back to the point where I can at least think and speak but not much more than that.

At night, I frequently am unable to get to sleep easily no matter what time I go to bed.  I may go to bed at 10pm or 11pm but still not get to sleep till 2-3am.   Once I do sleep, it is frequently broken and regularly am unable to get back to sleep again for far too long. Taking Gabapentin for restless legs syndrome does help a little, but it hasnt totally solved this problem.  If I do manage to sleep through the night (extremly rare even with taking something to help me sleep), I still wake up feeling like I haven’t slept, certainly do not feel ready for the day, and often am in a lot of pain with a large dose of muscle aches a bit like flu and wanting to just go back to bed.

When I don’t have to do anything much that day, I may stay in bed till after 11am and then may have to go back to bed for a nap somewhere between 1pm and 4pm.   I will often then sleep for another 2 hours.

On the weekends it is not uncommon for me to have upwards of 12+ hours asleep – but still feel like I haven’t slept.  Many weekends I spent around 75% of my day in bed – either sleeping or just resting to get the energy back to start again on Monday.

I frequently experience cognative problems.  Often this is a problem with memory.  This is not just “Oh I am forgetful” but more than that.   Sometimes I will forget the beginning of a sentence by the time I get to the end of it.  Many (if not all) people sometimes forget names, but I sometimes forget names and things I have just spoken about in the sentance before 30 seconds ago.

When reading, I often have to read and re-read the same passage multiple times.  Sometimes I don’t even realise I am doing so until several times later I suddenly realise I’ve been re-reading the same text over and over and none of it has gone in.  Some times while I can read the words easily – they just seem meaningless to me.  I don’t have the mental energy to be able to make sense of them.  This is not something like dyslexia as other times I can read perfectly well.

I find it harder and harder to grasp concepts which would have been second nature to me a couple years ago – I am always wading through treacle when trying to think about things.   When looking at new IT processes this can be very challenging as I have always been self taught  but it often feels now like I can’t pick up new ideas.

Lastly  I am sometimes so tired with additional cognative issues that when I speak it doesnt make a lot of sense.  Sometimes to my own ears I probably sound like someone who has recently had a stroke as the sounds that come out of my mouth are not easily understandable.   I believe this is a conbination of extreme fatigue and cognative dysfunction.

Pain, especially muscle pain is a constant feature. Often this feels like the muscle pains you have with a bad flu.   Frequently I find I have to alternate between sitting and laying as it gets too painful in one position. 

This is often all over but specifically worse in some areas: Leg pain is most frequent and feels like I’ve run miles, sometimes I get bad cramps in my calf muscles of feet.   Often tender to touch – and can actually hurt to just rest my feet on the floor at times. 

Back pain is frequent too – both lower and upper usually with no clear reason why.  For example its very rarely related to movement or lifting anything.  It may be sitting in my chair and then without even moving – my back is suddenly painful.   Occasionally this is bad enough to cause me difficulty walking.

As well as the muscle pain described above, I also have problems with my joints although (apart from some gout during 2022) no swelling.

During my most recent symptom crash, I was prescibed codine as the over the counter cocodamol wasn’t doing enough.  The codine has helped – but I only use it when things get really bad.  I did get this prescription refilled twice since then – but each time it lasts me around 5+ months as I take it rarely when needed so there is less worry about adiction.  I am running “low” again now – so will probably request more in January and hopefully will be able to get this filled.

I frequently feel “unsteady” or dizzy when standing up.  Often this is not immediate but affects me a moment or two after standing.  I may be sitting in my office and get up and go speak with my wife – and must stop halfway through my sentence because I feel like the room is spinning.   I am often unable to think clearly unless I sit down, I just find it hard to think properly when standing up.

I never used to, but I now am very sensitive to loud noises.  A sudden loud noise can make my heart start racing and I feel like I am having a panic attack.  More recently this also causes me physical pain too – although I am unable to really identify the pain itself.  I guess it adds to the general aches I have and makes them worse? 

This has become worse over the last year or so, now I find it very hard even if I am downstairs with family and most recently I have had issues where even laying in bed listening to an audible book I have to turn it off as the sound is causing me stress.

This can make other symptoms more severe too – in particularly brain fog.