Son diagnosed with ME/CFS

I have had it for 32 years. I collapsed in the days when it was called "Yuppie Flu". Alternative therapies have been my lifeline and after 2 years of being bedridden I was finally able to get out of bed.

Wanted to say how sorry I am to hear this, Daisy (pressed send too soon)

So sorry to hear your news Daisy. The only advice I can offer is to advise him to pace himself and if he's too exhausted to do something then just abandon it for another time. It's all too easy to push yourself too far - pot, kettle, black here! - and end up setting yourself back. The standard NHS advice of graded exercise has, thank goodness, been given the heave-ho by NICE, as it caused many problems and much distress to those with ME/CFS.

I was diagnosed 25 years ago by an enlightened neurologist, who didn't go along with the thinking of the time - that it was psychological and could be cured with CBT. In most cases it seems to be that the brain is willing, but the body isn't!

I have had CFS for over 40 years. It wasn't so bad at first but I never rested and had a child and ambitions to keep going. Sadly I ended up with Fibromyalgia and various other ailments as well.

I try to tell people that rest is so importent but those of us that get this awful illness are the very active people who won't rest as needed.
OP Tell your son to rest in order to recover. If only I had been warned that my inability to take care has ended up with me in a wheelchair unable to cope without care. I knew one woman who had private health care and she was warned. She did avoid getting worse I am glad to say.

Those of us relying on the NHS have not done very well.
Alternative therapies are the best way to go. You need to research the best in your area.

I try to tell people that rest is so important but those of us that get this awful illness are the very active people who won't rest as needed.

This is so true. I tried to carry on working fulltime while bringing up 4 children and entertaining my husband's business clients. I kept telling myself I just needed a holiday. Eventually I had no choice to rest as I collapsed.

I wish someone had told me ..... given me "permission" to give in to the exhaustion, so to speak ......

Daisy I would advise your son to join a closed UK Facebook Group for ME/CFS and also perhaps the ME Association. He will then get lots of support and helpful information.

I wish him all the very best.

30 years for me and like sparklefizz the diagnosis was referred to as yuppie flue by some medics, colleagues (not all fortunately) and sadly also friends. My family were supportive if bewildered. Our sons were early teens and perhaps the most bewildered of all. I was lucky, never totally bedridden, a more than sympathetic employer alllowed me to work in whatever way I could, sometimes I was only there for an hour. We found a cleaner, Mr C took over many tasks I had carried out at home. It’s a complex condition presenting with a range of symptoms. I’d be reluctant to say definitively what works, it varies far too much from person to person. I also found little help other than through an (NHS) homeopathic consultant snd a (private) nutritionist. Pacing was and is a lifeline. Lots of information about that to be found via Google. Latterly a referral to the pain clinic proved useful as did gentle yoga, Mindfulness and relaxation techniques.

It didn’t feel like it could initially but life did go on and I gradually found a way to achieve what I wanted to and indeed needed to. Please reassure your son he can still live a fulfilling life albeit differently and no, it isn’t his fault. PM me if it helps at any time daisy, I think sometimes it’s harder for family than the person with the diagnosis.

I am so sorry! Another one here 12 years- and again I was very active and busy. The most useful thing for me was learning to pace myself and gradually I got better- not totally- I still have to pace myself- but I’m much more able than I was.
My CFS started with severe pneumonia and when the symptoms of long Covid started to be reported - it was all so horribly familiar. I’m rather hoping that ongoing research into long Covid may advance knowledge of CFS/ME also. Fingers crossed.

I should have said that it was helpful to have help with learning to pace! I thought I was pacing properly but eventually I was sent to an OT who picked up that I was just plain trying to do too much. Some sports and parenting ( I have a disabled child needing at the time round the clock care from me) demand carryon well beyond being tired - so I don’t know if that is a predisposing pattern! The OT gave me diaries to fill in so everything including the minutiae of life ( listing ‘putting on socks’ rather than ‘dressing for instance) so I could see where my limited energy went!

I’m rather hoping that ongoing research into long Covid may advance knowledge of CFS/ME also. Fingers crossed.

Me too. My ME started from a virus.... well, in fact, I had 3 viruses circulating in my blood, apparently, and I couldn't fight off any of them. One of them was Glandular Fever.

Information is your friend and your son’s. There is no magic bullet, but plenty of snake oil salesmen out there promising that if you only follow them, then a cure will be achieved. Best to ignore them.
The ME body is in a state of inflammatory exhaustion. The best anti inflammatory diet that he can afford, some therapy when he can face it, because its a really hard thing to get your head round..
There is a common metaphor for the lack of energy said to be measured in spoons. The average person may wake up with reliably fifty or a hundred spoons. The ME person will wake up with a very unreliable spoon count. They may think they’re not too bad when they wake, maybe half a dozen spoons, maybe ten. But when they have a shower they might find that there’s no spoons left and the rest of the day is spent resting. Sometimes a spoon or two might turn up in the evening, which is nice. There very little pattern which is frustrating.
Some days there are no spoons at all, which is quite bleak, but it passes and a few come back.
He has my sympathy; the first ten years are the worst. Bit like a bonfire, then it burns itself out and smoulders indefinitely with the odd flare up. Good luck to you both, he’s lucky to have you.

I'm almost 20 yrs Daisy so truly understand how difficult it is for your son and good on you for trying to help. Unfortunately son's wife convinced him I was seeking attention (she has diagnosed NPD and other MPD, so knows all about seeking attention...but that's another story) and I can't believe how/why DS believed her. Anyway that's his problem but it means I don't get any support, not that I would ask for anything, but some 'moral support or understanding' would go a long way...which is why I thank you for wanting to help your son. I was his age when I ended up with ME after two separates of a nasty virus and my life has never been the same.

Really there is not much anyone can do except be there for sufferer, because as others have said above, one day you might wake and think you could conquer a mountain...until reality hits and you barely have the energy to shower, get dressed and have breakfast, let along do anything else for the next day or three.

The Pfizer (Covid) vaccine hit me like a Mack truck, second vaccine 4 weeks later wasn't much better and I am still a very long way from 'my normal'. This has been my last 3 months...recovering from a vaccination, sounds crazy eh?

I am hoping one of the good things to come from Covid is there will now be lots of research to find a way to treat ME with so many people reportedly suffering 'longCovid'.

Thinking of you and your son and wish you both all the very best...and I truly mean that.

Our daughter had ME just after her A levels and Glandular Fever and had to put off going to University, fortunately our GP told us that all she could do to get better was to rest, as she was still at home ( and I gave up working to look after her) that’s what she did, she rested for almost 2 years, but eventually got better and was able to take her place at Uni.
I dread to think what would have happened if she had been older as she became a workaholic. She is now almost 50, became a vegetarian during her illness and hasn’t looked back, although I do fret that she pushes herself too hard.
My niece has also been diagnosed, she has a small child, so no chance of rest and has been unwell for nearly 3 years .
So, just resting seems to be all you can do.

I believe Esther Ranzens daughter had this for some time. She did make a full recovery I believe.

Allsorts

I believe Esther Ranzens daughter had this for some time. She did make a full recovery I believe.

I remember reading that Esther's daughter improved on a gluten-free diet. It might be worth looking into.
www.verywellhealth.com/gluten-intolerance-fibromyalgia-715771

My DD has had CFS since contracting glandular fever when she was at university. She has battled her way through it, raising 4 children. It hasn't been easy for her. Fortunately she has a very good, supportive husband.
Lately she has been trying a diet which cuts out gluten and fructans, and has found a huge improvement in her energy level. It's not an easy diet to follow, but if you can manage, it must be worth trying.

DH was diagnosed by a very enlightened GP practice 30 years ago. It was a long road to recovery but I think it was helped by going totally organic and taking Selenium ACE. Worth trying.

I went gluten-free and dairy-free and this helped. I still live a restricted life and have to pace myself quite drastically, needing plenty of rest periods.

Hi, I was diagnosed with this in 2019. I am in my sixties, btw. I was very lucky as I had support from the local fatigue clinic (GP refers you). I am better than I was, but not recovered yet.
‘Pacing’ is all important, and a very fine art…
Also, lots of people don’t understand what ME/CFS is, and need to be told several times it is not just ‘tiredness’.
You sound very supportive which will make a huge difference to your son. Good luck x

Thank you all so very much for your responses to my post. I will do some research into gluten and fructans, though at the moment I'm not sure what fructans are - fruit, perhaps. I'll be seeing him for myself in a couple of weeks. I'm trying to prepare for a shock, as I haven't seen him since June. I send my sympathy to all of you who are being affected by this illness. I know he sees the ME Association publications, as I do. Your support means a lot and I'm very grateful.

Ah, now I know about fructans! I know he's into meditation and mindfulness. I will let you know after I've seen him if there's anything to add to what I've already said. I do hope that the prevalence of Long Covid will encourage more research and funding, for all of you.