Those of you with chronic fatigue syndrome..

[worldwidetravel2017]

.. dya mind me asking what you do work wise ?
Signed off at the moment but feeling a bit stuck
Many thanks

No, when I finally managed to jump through all the necessary hoops to get a referral to my nearest CFS specialist clinic (there isn't one in my borough, could only get to neighbouring borough's one via consultant referral), they met me once and referred me on to CBT, then had one further telephone appointment and discharged me as they needed space for Long Covid patients.
I've not seen anyone in person about my ME/CFS since 2019 and even my last "virtual" contact was 2021.

Did any of you apply for an access to work grant ?

Sorry to hear that

Did you have or ask for counselling?
Or access to work grant or anything?

Personally no. It was useful to have an official diagnosis so I could ask for reasonable adjustments at work (but I’m self employed now so less relevant) but the actual services didn’t suggest anything to me that I didn’t already know/wasn’t already doing.

I haven't asked for counselling as I don't have any need for it. (The CBT gave me a depression score of 4 and an anxiety score of zero).
I have not applied for an access to work grant as I'm self employed and DH earns plenty for us both. While I only work about an hour a month I charge £100 an hour so still make enough to more than pay my business expenses.

No, I never recovered after a 2 week virus/flu in 2008 (dd had similar bug at same time). Back and forth to gp, blood tests etc. Eventually told I had post viral fatigue and they could do nothing for me, just go away and get on with it.

Off sick for 6 months then returned on reduced hours after small improvement. Lots of research myself, trying different supplements etc.

2012 moved to a city and asked new GP if I could get re diagnosed as I'd read that PVH is supposed to be a temporary diagnosis.

Got diagnosed with CFS by a infectious and tropical disease consultant. Referred for a set of sessions with an ME/CFS NHS service run by a team of psychologists and physiotherapists.

Advice on pacing, diet, graded exercise etc. Wasn't really appropriate for me as I was working and couldn't apply the pacing in line with my job.

Had a few chats with the psychologist there who very smugly told me that she felt my diagnosis wasn't valid and she thought I was just depressed.

Told me she thought I had repressed grief from my mother dying. I pointed out that my symptoms began in 2008 and mum died in 2011. She sighed and said rudely that there was nothing physically wrong with me.

Since then I haven't bothered doing anything apart from my own research, Facebook groups etc.

So no, NHS has done very little for me!

@Stressybetty i paid 250 gbp 4 a consultation with a private rheumatologist - not sure if youd want / like an opinion from a rheumatologist

Thank you, I don't think it's worth it really. I am looking into LDN which I might try at some point

Recently got back into the workplace after 6.5 years. I do part time admin for a charity. They made all the necessary reasonable adjustments and are very supportive.
I still get bad fatigue but it’s manageable.

Just some questions I have been mulling over in the last few days, not work related just interesting.

Can any of you identify what may have triggered CFS in the first place?

Did any of you have ACE (adverse childhood events - definition on line, could be poverty, abuse, death or poor mental health of parent etc).

I have read somewhere that these have been seen as linked/precursor to CFS (presumably they took a control group into account, I think it was a study I read).

Have any of you had anything work even on a temporary basis - whether alternative medicine/therapy or 'normal' medicine?

I haven't ventured much beyond pacing, eating sensibly, and some supplements. Vit D, Coenzyme Q10.

Amitryptyline for sleep/headaches from GP.

My CFS was triggered by long Covid (which I've had for 2+ years). I spent a LOT of money on specialists and (very expensive Harley St) testing confirmed that Covid has badly affected my autonomic nervous system (amongst other things) and left me with CFS. I see a psychologist weekly at present as well as having had a workplace needs assessment and some specific coaching to help support me at work. I also see a gym coach 3 times a week to try and build my strength and energy levels. It's an uphill battle. My life has changed beyond recognition.

So sorry @HundredMilesAnHour. It's life changing for sure. I'm 10 years in now. My boy was 3 when noticed having symptoms for no reason (he was sleeping by then but I was just as tired as when he wasn't).

I'm currently off work post covid. Covid does impact it a lot, and even when I'm 'better' I think its left a real dint in my armour.

I don't got to pubs/work dos/cafes - only outside ones really in summer.

Twice when I have had Covid its been via school, but I can't limit DS's activities just because I'm vulnerable.

Had all the jabs (Covid got me before jabs were available to me this autumn - got it mid sept).

I do get very irritated by people saying why bother testing/its just a cold now.

Beg to differ.

@Alltheyearround I totally agree!! Covid has had a life-changing impact on me. I caught it in my office from a client 😡in the days just before people realised that it could present as a cold. I was super-fit (gym every day) and healthy, working in a high pressure job in Financial Services. Since then I've had 2 periods of 6 months sick leave, 2 relapses, then another 4 months sick leave with a 3rd relapse and now I'm on my 3rd attempt at a phased return to work. I still have cognitive issues (although these are not as bad as they used to be) which combined with CFS means I may never be able to return to my career as it was. My future is very uncertain. I'm single, live alone. I am my only source of income and need to work (especially as I now have some hefty bank loans to pay off from all the medical bills).

So people not testing and merrily spreading Covid around without a care in the world is a real hot button for me.

Had covid jan 2021
Had glandular fever - summer 2022

Consultant rheumatologist says my body has struggled at least since jan 2021

The closest I can think to a trigger was that I had anaemia the year before I got CFS/ME, that resolved with iron tablets.
I have had glandular fever, but 15 years before any ME symptoms so I doubt it was that.
No trauma, or mental health issues before or since.
Weirdly, having Covid made me feel a bit better briefly , I only knew I had it because DH was ill and I was testing regularly for the ONS study,

I was diagnosed about 15 years ago, aged 30 now. I was quite severe as a teen, but it's mild now. I think the key thing that allowed me to improve was to not push myself too hard when I was severe.

Work full time as a business process analyst. Work is manageable for me, as I work from home and the work itself is pretty easy. I'm struggling right now to do much else - cook from scratch, keep the house properly clean, or exercise.

Has anyone had experience with LDN treatment? I'm looking into starting that.

What's LDN?

Low Dose Naproxen.

No, I haven't been offered any medication at all, not even pain relief, just left to suffer in silence.

I’m in my sixties now and thankfully getting the state pension and PIP. I never had as much energy as my sisters when I was little and remember going to hospital several times for heart checks. All they ever said was that it was ‘slow’ for a child. As an adult I developed Hashimoto’s, Lupus and RA with a side order of fatigue for each.
From my experience, conventional drs have been of very little help and some have been just awful in implying that I’m either lying or ‘just depressed’.
The first ten years were the worst, like a bonfire, and now it is more like constant embers with two or three big flares a year.
What has helped has been the internet information, private counselling, nutritionists and for me the Autoimmune Protocol. It is a difficult diet to do and you can’t really do it for too long because you lose weight so fast, BUT I did learn that I’m not just gluten intolerant but also eggs , nightshades and oats. That was a low point. But I am way more stable.
So the point of this essay is to be the expert on how it affects you.
The clue to how I earned my money is in my name so I should probably change that now.

That is interesting. I was anaemic in the year before I got CFS, after a few years dragging myself around with horrendous periods. I had got so worn down mentally from feeling like death most of the time, no diagnosis despite laparoscopy. (It's your age missus basically). Hysterectomy eventually, but never felt really well after. I developed numerous food allergies and intolerances.

Long story short, I've had CFS/ME for decades. I saw an endocrinologist for diagnosis, but he suggested long-ago Glandular Fever has been reactivated.

I have managed to avoid Covid so far, but have been so Ill the last few weeks and tested negative. Whatever the illness was, I have been knocked for six with the worst crash ever. Trying to stay positive. Every morning it's do I brush my hair or not? Brushing my teeth is enough of an effort!

Edited twice because of faulty brain.

Ive also been anemic

Im concerned re lack of income
&
Lack of independence

Desperately wana work at least part time
But like today i slept all morning - maybe as i took a short walk yest afternoon
And dida little socialising last night

Bad pem etc.

Wish i could find / get a wfh employed part time job

I had a shit night's sleep, it's been a long day since I woke at 2.30am.
So annoying how the more tired I am the worse my sleep quality is.
I don't have the energy to mentally squash down the muscle pain today and paracetamol is not doing the trick either. I need another nap but daren't risk it this late in the day.

I have heard this before. CFS symptoms being alleviated by Covid. Just anecdotally but it is really interesting. Is there any research on it?

I've just had a really mean bout of Covid and am being extremely cautious as 3-4 years of my life were wiped out with post-viral-fatigue after a really bad flu that I wasn't allowed time off work for! I only recovered by doing nothing for a year except try to get well - full on bed rest, vitamins and mineral supplements, super healthy diet overhaul, very gentle yoga and walking, meditation and affirmations, hypnotherapy etc - I tried every woo thing I could think of and eventually my energy returned. I feel very sympathetic to those of you who have it long term. It's half a life, or less. So demoralising.

Heres to an easier day for you tomorrow