The blog of photographer Kim Ayres

I still have it...

It was around 14 or 15 years ago I was given the label, CFS/ME – Chronic Fatigue Syndrome – after a good couple of years of trying to get to the bottom of why I was so bloody tired all the time.

Initially I was delighted that my unexplained condition was recognised, and I could no longer be accused of just making it up to disguise some form of laziness.

However, because CFS/ME is a diagnosis by omission, it means the medical profession have no idea what causes it, and therefore no idea how to cure it.

Essentially you are given the usual raft of tests, but nothing shows up: the body doesn't appear to be producing extra white blood cells to fight off infection, you're not lacking in vital minerals or vitamins, you're not suffering from sleep apnoea, there are no rashes or raised temperatures, and so on.

So with nothing being flagged up, and no other indicators of known illnesses, they run out of things to look for and at that point, give you the CFS/ME label.

It's a way of saying, “we accept something is wrong – we don't think you're making it up – but there's bugger all we can do about it so now go away and live with it. Oh, and if you need some anti-depressants to cope, just give us a shout...

Over the years, by being a bit more careful with my diet, doing all the sleep hygiene stuff (no TVs, tablets or phones in the bedroom, for example), and trying to use meditation and mindfulness techniques, I've lessened the all-consuming intensity it originally had on my life.

But it has definitely not gone away and it's effects and impact are felt and dealt with every day of my life.

However, we humans are extraordinarily good at normalising, and on not so bad days I can sometimes wonder if I am just making a fuss about nothing... until suddenly I crash, the brain fog descends, and I can barely string a sentence together through slurred words.

Still the nagging doubts have persisted.

What if the doctor who originally diagnosed me (now retired for over a decade) had missed something more obvious?
What if there are new tests that can pinpoint what is actually causing my symptoms?
What if there are new treatments that could dramatically improve my quality of life?

With this in mind I went back to see my doctor this week. 

I've not actually seen her in person for several years because apart from the Chronic Fatigue there's never really been anything else wrong with me. The B12 jabs I have every 3 months, and the pint of blood I have removed a couple of times a year because of my haemochromatosis (both discovered in the original search for what was wrong with me, but neither actually having anything to do with the CFS/ME), have only required interaction with the nurse.

After chatting with the doctor for a wee while, discussing my symptoms and my desire to revisit the diagnosis, she said she was as convinced as ever that CFS/ME is what I have. In particular, the fact that nothing new has developed over the intervening 14 years was a pretty good indicator that it wasn't anything else that had been missed. If it had been something else, then it would have got worse to the point where it would have become more obvious what it was.

Still, I'm in my mid-50s, so now is probably a good time to have a men's health MOT and have a thorough check up for all the usual stuff, so that's been booked in for the not too distant future.

Perhaps something might show up, but it seems unlikely.

So if I turned up fresh today with all the symptoms I have, I would still be given the CFS/ME label.

The only hope is the appearance of Long Covid, which is incredibly similar to CFS/ME.

Basically the medical companies don't invest in research and development unless there's a profit to be made, and there have never been enough people with CFS/ME (or even enough acceptance within the medical profession), to make it worthwhile spending the millions or billions required.

But with so many more people around the world suffering from Long Covid, it might just start to become a possible money maker for the company that can find a cure.

And if they can do that, there's a damn good chance it would work with CFS/ME too.

Meanwhile, I'm left with complex feelings over this visit to my GP.

On the one hand, I definitely have CFS/ME, so maybe I can now let go of the imposter syndrome fear that perhaps it was just something I subconsciously made up and there's nothing actually wrong with me.

On the other hand, I still have CFS/ME and it's not going away any time soon, if ever, so I will continue to have to live with the impact of the symptoms on a daily basis.

And that's not an easy thing to feel OK about...


Anonymous said...

Hi old Friend, I tried to comment through my blog but it appears to have been hacked and I no longer own it. It's me MAPS.
I've known about your condition as long as I've known you and I'm sorry to hear that it's still there. My daughter in London has had many similar symptoms over many years and was diagnosed with CFS and Fibromyalgia. Coming from a medical background herself she was always researching and was convinced it was something else. She eventually got a diagnosis for EDS/Hypermobility, and is now doing so much better. I'm not suggesting this us what you have Bur just saying it took years for someone in the medical field to really take the time to find out exactly what she had. She still has her bad days and sometimes has to use a walking aid and very occasionally a wheelchair. I hope you are coping well. Eventually, I will make the relatively short journey to visit you in person soon. Take care my friend.

Kim Ayres said...

Hi MAPS - so sorry to hear of your daughter's struggles, but glad to know she finally got a proper diagnosis. It must have been so difficult for you as a parent not knowing what was wrong with your daughter.
I'm very fortunate that I've never had the aching muscles and joint pains that many with CFS/ME suffer with.
But I think the biggest problem with getting the CFS/ME label is it means the medical profession stop looking. It's a label that says they've gone as far as they're going to so we just have to find a way to live with it.

BTW, as your blog is on blogger, which is part of google, if you go in through your gmail account, it might work, or you might find a way of getting ownership back. Apologies if I'm just spouting something obvious that you've already tried and been banging your head against

Pat said...

I have a great respect for how you have managed your condition - over the yeasrs and boggle at the effort and sheer hard work you put into your weekly podcast and sometimes worry that it may be too taxing for you. However I know you have strong back up support and oodles of common sense so shall say no more - just all my wishes for peace and tranquility

Kim Ayres said...

Pat - thank you :)
Oddly enough, I find the podcasts far more taxing when there are fewer people or not as many comments.
When there is plenty of interaction, I come to life, but when there is little or no response, I find my energy draining faster than ever and it becomes much more of a struggle to keep the pace going. And afterwards I feel far more exhausted.
It's like the more people there are at the podcasts, the less I feel I'm carrying the weight of them on my own.

neena maiya (guyana gyal) said...

I swear I left a comment here, similar to Pat's saying that I admire what you've achieved despite dealing with the awful fatigue. The thing that fascinates me also is how generous you are with your skill, your time, your kindness. I hope one day they find a way to treat CFS, Kim.

Kim Ayres said...

Neena - thank you for your kind and supportive words :)
Feeling that what we do can make other people's lives better on some level, however minor, gives a deep, primal sense of meaning and satisfaction.
Putting in the time, effort and energy, and it making not a scrap of difference, feels completely pointless and draining.
The difficult part, the dilemma for me, with the podcasts is the numbers and reactions are so low for the amount of energy I put into them.

Cindy said...

Do you ever visit You tube? There is a Doctor Berg on there that deals with many things. There are all kinds of helpful suggestions available. Just thinking perhaps he could help you in some way. Best of luck and God bless you!

K said...

Hi Uncle Kim! I just wanted to tell you how much I can relate to your struggles. I am in a similar situation to you. However my inflammation and white blood cell levels always show up as higher than normal. I have been tested for pretty much everything and it always comes up negative. I am starting to really wonder if there is a correlation between past mental trauma and current physical ailments, although I would like the opportunity to one day be able to afford to see a top specialist. I am really sorry you have to go through this continuously and hope you manage to heal too. Lot's of love

Kim Ayres said...

Hi K - it's not unlikely there's a link. I think both inflammation and a higher white blood cell count are common in people suffering from PTSD.
Love and hugs xx

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