Oh those early days of being ill. It might be a surprise for some people reading this but I look back on them now with such a sense of light and fondness.
I didn’t understand what I had when I first was ill, so I still had a job, a social life, a boyfriend, a wide group of friends, hobbies, interests – you know. A life, that life. I still have a life of course, but now having ME has changed it.
I didn’t expect that I’d fall so ill but I also didn’t expect that once I knew I had CFSME I’d have to do so much bloody detective work finding out what was wrong with me and why 🙂
This is one of the reasons I wrote what I wrote about the NHS and Charities in this post.
It just takes me aback that patients spend so much time and energy exploring, seeking out and doing the hard work about informing themselves about this illness and yet in return, what we get is an out of date form of treatment that benefits some patients, and harms others.
It really takes your breath away that this information isn’t offered to us as part of our care with ME clinics or GP appointments. I’d feel so excited and optimistic to even have a little bit of that info being given to me by a person involved with my care. It would signify progress and in turn, hope and hope should never be underestimated for people like me with a long term health condition.
Little did I think though, that the entire reason I might have ME might be because I am a woman.
Yup. Women’s problems. I’m gonna talk about them. Turn away now.
In the sidelines in the CFSME community I belong to and when us women get together, we ask each other questions about it.
One of the things that comes up time and time again in the friends I’ve made and people I’ve met, is how bad our ME symptoms are according to our ..well..there’s no nice way of saying it….our monthly cycle.
Yup. It’s true. My hormones affects my ME symptoms, making them tonnes worse. OH my god so much worse.
Since I’ve had ME, I’ll never EVER moan about PMS ever again.
Come on body, you are doing enough to me!
Well there’s quite a lot of discussion ‘out there’ about whether my illness is made worse by female hormones. There are ideas around that something in the hormonal mechanism in the body that is being thrown out of kilter by CFSME.
I won’t go into all the gubbins about endocrine systems and how our symptoms look a lot like Estrogen deficiencies et all. It’s not important.
What I care about is that so far, there’s no research that has thoroughly unpacked this symptom in detail. Yes, there are a few academic papers here and there, but nothing really substantial or even a sustained research strategy has explored this aspect to CFSME.
And here’s where I start to get really ticked off. Because the psycho-social model of CFSME which is practiced in NHS ME Clinics proposes that the reason for our fluctuating symptoms are the results of a: “Disregulation of the hypothalamus-pituitary-adrenal-axis.” They sometimes shorten this to: “hypo-pituitary-adrenal-axis disregulation.” This is the axis that influences my hormones too.
I know. I’ve seen it on a whiteboard and written down in documents the clinic hands out. I’ve also had it said to me when I’ve questioned why I’ve had these hormonally based symptoms.
That’s what they believe is going on and it became a cure-all answer for anything I’ve brought to them.
“I feel so much worse when it’s the time of the month…why is that?”
“Well, it’s because of the hypo-pituitary-adrenal-axis disregulation.”
“I can’t handle emotional stress in the way I used to, why is that?”
“It’s because of the hypo-pituitary-adrenal-axis disregulation.”
“Why when I use up too much adrenaline, when I have to do too much physically do I crash?”
“Because of the hypo-pituitary-adrenal-axis disregulation, that’s why.”
When I’ve said: “but I’m laid up for days with far worse symptoms, what am I supposed to do?”
The answer is: “Well, you’ll have to plan to reduce all your other activities to accommodate it. ”
Yeah. I already have reduced most of my activities and am limited in my life. And …as for planning….at my time of life….I can’t always say when the time of the month is on it’s way. Sometimes it’s the time of the 7 weeks or 2 or 3 months. 😉
It’s this sort of thing that makes it really difficult to see how you could control symptoms enough to think about working, as only one ‘for instance’ of why it’s hard for me to picture a working life any time soon.
HPA Axis academic paper
In the research paper I’ve linked to in this diary post (above, published in 2013) it says that the any abnormalities in the HPA axis are subtle and they suggest that this confounds or confuses the picture of whether this is happening for everyone.
It suggests that a broad research strategy needs to be implemented to look into HPA in CFS in more details and also puts forward the idea that it might be applicable for some people and not others.
It says that psychological interventions like CBT can be useful but there are wide variations in to what extent.
They suggest that CFS is, in fact, multiple illnesses with different causes brought under one umbrella term and that’s why it can’t be said it influences everyone. That’s what I believe, by the way.
It also says that any research can’t come too soon for patients who have had their lives destroyed and that development of a cure cannot come fast enough. Never a truer word has been said.
As I’m in my 40s now I’m frankly counting down the days until menopause kicks in because someone I know who has had ME for years and years said that her symptoms got better.
When I have the worst of my symptoms, I hang on for that time of my life. Research, let’s see if you get there first!!
© Lindy 2015