Is chronic fatigue considered a Lady Disease?(47 Posts)
More women suffer from it than men and it's thrown into the same group of conditions as Fybromyalgia (the new Hysteria) and post-cancer fatigue. There's barely any research on it and zero treatment or cure available. Is this because it's considered a female affliction and thus not worth working to fix?
If that's the case - I'm screwed. I've been crippled by overwhelming post-chemo fatigue for 2+ years and it's not improving at all. All the docs and therapists just shrug their shoulders because they don't have a clue what to do with it or even how it works. Is there hope for me that they'll develop something in the future?
Do you exercise at all ? Post chemo blues/ fatigue are helped enormously by even limited exercise. Country walking, swimming, yoga literally anything. You have to really force yourself initially but it does help.
I think you might be right ava. It's definitely considered psychological in some quarters. Don't know what the stats are for m vs f though.
I asked my GP about chronic fatigue after a year of exhaustion. He basically told me it’s not a real thing and people diagnose themselves with it after reading the internet.
Super helpful. 🙄
I've taught a few kids with it and they've been a pretty even split between boys and girls. My school certainly takes it seriously, with students having reduced timetables, rest breaks and so on, so I'm surprised to hear it's considered 'not a real thing'. These kids are obviously struggling.
I know three people with chronic fatigue, two women and one man. It was very hard for the man to get a diagnosis, so maybe it's just really underdiagnosed in men? Or maybe women are more likely to experience the triggers? I know for one woman it was triggered by childbirth and looking after a small child.
Don't push yourself to do exercise if you don't feel up to it, it will probably make it worse.
As for it not being researched because it's a women's disease, I think that's unlikely (I say this as a reasearch scientist). I just did a quick search on pubmed for fibromyalgia, there are over 10,000 articles. And over 7000 for chronic fatigue.
It's probably more because it's an umbrella term for when doctors are are not completely sure what is wrong (like ibs) doesn't mean it isn't a real thing, but it's a very hard thing to research and help as there probably are different issues with different people and not one underlying cause.
I'm sorry you are struggling
I have had some decent help and advice with fatigue. I have been dealing with it after septic shock with multiple organ injury. Once my bloods were scoring in normal ranges they said you know, there's not a TON we can do about this from now on medically but here's our best bet, which was:
Take vitamin D and eat well.
Go to bed early and keep a routine.
Exercise in the early morning and get at least half an hour of sun exposure before 2pm. I go swimming and walking and do Pilates.
Take frequent breaks (every 2 hours if at work) and spend 10 minutes or so quietly at rest, no reading etc- I do a meditation once or twice and then just a mindful walk.
Don't get too hung up on it - you will do stuff that unexpectedly makes you super tired/crash and that can be worrying but don't let it stop you trying the next time.
So I've been doing that and it's helped me a lot.
It absolutely is a feminist issue and there is a huge lack of adequate research into it. Not research per se - it's actually quite a good area to be in because lots of studies get funded. But that's studies looking at the emotional failings of women who have it. In the case of chronic fatigue syndrome in particular, you get a lot of studies looking at neuroticism in the patient (and the patient's mother ), how prone to anxiety and depression sufferers are, how much they fixate on their illness and what they get in the way of secondary gains from maintaining a sick role (apparently being fatigued gets you out of having sex and doing housework). Names such as Wesseley, Chalder, Crawley and White pop up again and again on studies but there are many others looking at these issues. It is a scandal and I think one which many feminists aren't hugely aware of. Fatigie does absolutely disproportionately affect women.
If you want to know more there's a superb doccumentary on vimeo called Voices from the Shadows which you can watch free (using the code VOICES I think). There's also a documentary called Unrest which is on itunes.
I really hope your fatigue eases op.
See the film Unrest, by Jennifer Brea if you can. I didn’t realise how gendered the whole thing was
I think all those areas are valid areas of research and are not necessarily about attacking women. I'm sure some have been used to attack women but I don't think it's necessarily the case.
We know that illness can be experienced and expressed differently in different cultures, situations, and over time. It's useful to consider that sickness can be a stage upon which human beings act out deep truths about life and experiences, some too unbearable to articulate in any other way.
The Cartesian dualism conception (of mind vs body) is common but not particularly medically useful so far as I understand it. Certainly the most interesting ideas in chronic pain seem to really be confronting and rejecting dualism.
Zoll I think I'd be slightly more inclined to agree amount with you if the same or more money was going into solid biomedical research into fatigue. If people were actively working to reduce peoples' suffering.
There has been so little done though. If you had a diagnosis of cancer and it was having a serious impact on your life, would you be happy knowing that most of the research being carried out was on whether your mother had post-natal depression, or whether you had 'false-illness beliefs' and were indulging in your illness to get attention? Or would you appreciate some research being done on how to halt your tumour? As a fatigue sufferer i've watched for years as people have produced work on the psychosomatic nature of my illness whilst biomedical research either doesn't get funded or only the smallest studies are. These have largely then been dismissed because of them being small. In the meantime three of my friends have died and many others are housebound and too ill to participate in life.
This is a really interesting recent study looking at fatigue and mitochondria. This is the kind of stuff I want most of the research funds going towards. I don't mind a token amount going towards how illness is expressed in culture. I do mind if such things are funded at the expense of the biomedical stuff. There are so many people suffering horribly who need more treatment options.
I guess I am pushing back, slightly, on the idea of there being a bright line between psychosomatic and biomedical. I agree with you that there is a lot of poor quality research being done.
Also, yes, man, it SUCKS having a condition that cannot currently be treated adequately. It really does. I do sympathise.
We all come at this from different angles. I experience crushing fatigue subsequent to a life threatening illness as I set out above. I deal with it as best I can and I am lucky to have improved over time. Some people aren't so lucky and I acknowledge that, while still maintaining there are things one CAN do. Of course there are limits. My DH is paralysed from the neck down. There is no prospect of a cure, or even of much of his suffering ever being alleviated because there are no painkillers that can tackle chronic neurological pain - fentanyl, ketamine, gabas - nothing works long term. There's research into this - it's a huge area of investigation - but there still aren't any treatments, and the majority of quadriplegics are young men so one can hardly lay that at the door of misogyny.
I also have encountered many many people with chronic fatigue and chronic pain (the chronic aspect is important neurologically) who DO have the kind of fixed, low-insight mindsets that are sometimes described in literature. If that's not you, good for you, but those people exist (and are invading the support fora of quadriplegics btw) and deserve some kind of help too. It's not at all the proposition that the mindset causes the pain or that you can think your way out of it. That's really NOT the proposition. That's just dualism again.
So I am personally very interested in ways to alleviate suffering that are not bound to ideas of good vs bad or worthy vs unworthy. I want to investigate it all and do everything we can. (It is motivated reasoning just the same!)
Oh, this is a very difficult, emotive subject. I don't want to seem like I'm dismissing what you're saying. I'm not. I'm really trying to say YES AND not no but.
Yes, unfortunately. It’s seen as a lady issue, a malingerer issue - like fibromyalgia (please note these are not MY opinions, but those I see in the field.)
I work in medical research. There’s been some interesting work done on CF recently which seems to indicate that the internal power sources of cells from CF patients (mitochondria) are not working correctly. It’s very early stage work and it’s not at a point you can draw any clinical inferences from it BUT you could speculate that the general energy-utilisation systems are awry. Note also that what they mean by energy in a cellular sense isn’t the same as the energy /feeling perky you mean when you say you’ve no energy etc.
I suspect that CF isnt one disease, and nor is fibromyalgia. It’s more likely to be a symptom set caused by several underlying causes. A bIt like how fever isn’t a disease in itself but a symptom/state of being that has many underlying causes.
Research is also hampered by diagnosis not being precise. As it’s a lady disease it’s used as a catch all for ‘I have no fucking clue what’s wrong with you, please go away’ and that means that the patient population entering trials is probably suffering from many different underlying causes (my unit do some good work on making sure the correct patients get into trials.)
Another wonderful example of misogyny to be honest.
*WoWants2Now I got told this too...lke i didn't know my own body. Also laughed wen I said I was having no polar symptoms and said no polar is wen you do impulsive things like go out and buy a ouse...ive never had enough money to go and buy a house!!
CopperKettles Jesus.. .that explains a lot...i have had that attitude too..and having mental health issues too doesn't help me..
I was in the 1st Gulf War in a unit exposed to sarin and given drugs that were experimental. In 2011 I had cancer I am not not ever ave been an attention seeker or want to get out of things. Just burnt out from forcing myself beyond my physical capabilities day in day out. Just fed up of not getting anywhere and not being listened to. And it is an experience of many women I have spoken to that we are not listened to or taken seriously because of this stupid belief tha women are hysterical/ neurotic/attention seeking
Thank you Zoll.. I appreciate what you've written. Yes this is a very emotive subject. I'm mindful of the fact the OP mentioned chronic fatigue which covers so many different conditions whereas I have M.E specifically. It is a condition where fatigue is a major symptom for most people (but not all) but there is a lot of strong feeling around it and I do get pretty passionate about it.
I guess I am pushing back, slightly, on the idea of there being a bright line between psychosomatic and biomedical.
This really interests me when it comes up in these conversations (and it is interesting and I do get that we should talk about it.) I don't dispute there is a mind-body link. But there are so many conditions out there where this is never mentioned in discussions about treatment. To go back to cancer, one never really finds debates online where people are urging others to remember this. I mean, I'm sure if you're living with cancer, taking care of your mental health and getting adequate support is essential because god knows it must be horrible to cope with, but it's simply not a discussion which is had with regards people looking for what treatment to pursue (if there is any choice). I know cancer kills, but M.E at it's worst does too. And when it doesn't kill it can make people so profoundly ill they almost couldn't get any sicker. Every discussion about M.E seems to have someone wanting to discuss the mind-body link. There are actually many, many studies out there showing gross abnormalities in the bodies of those with M.E.
So I'm really interested in where that discussion comes from. It feels as if it's become quite trendy to talk about dualism. To my mind, it's linked to austerity. The government needed to save money from the welfare bill and so it became the thing to promote biopsychosocial medicine so as to reduce benefits. The insurance industry also only benefits from moving some illnesses out of their domain and into the hands of individual patients (as in, have a course of cbt, think more positively and you'll be fine! No need for us to spend money on you). Various psychiatrists in the pay of the insurance companies (or who want to cosy up to the government for all the benefits accompanying such actions....see Wesseley with his knighthood) have been happy to aid both and push biopsychosocial medicine and that has filtered down, I suppose.
Ultimately women have been disproportionately affected by austerity and these theories are part of that. It is of benefit to the government to tell me, as an M.E sufferer that the illness is in my mind, because then they don't have to put money into expensive research to help me. It's always been noteworthy to me that saying to a patient 'it's all in your mind' doesn't then actually prompt any indepth support or help. Everyone I know who's been told their illness is psychosomatic has been virtually abandoned. I was offered a 6 week course of group cbt. It was patronising rubbish and utterly useless.
We all come at this from different angles. I experience crushing fatigue subsequent to a life threatening illness as I set out above. I deal with it as best I can and I am lucky to have improved over time. Some people aren't so lucky and I acknowledge that, while still maintaining there are things one CAN do. Of course there are limits.
I'm really sorry you have been left with fatigue. I agree with you in that some people do deal with chronic illness in a very self-pitying fashion. They're a pain to be around and absolutely you have to look at what you can do. It's the only thing that keeps me going. However, (and I'm not sure if this is applicable to you so apologies if not) I do think most people have this idea of fatigue which isn't always correct. I'd say 90% of people who don't have it think of fatigue as being tiredness. But everyone's tired, right? Who isn't in today's world? Most people have no clue about how bad it can actually be, though.
There are supposed to be 250,000 people with M.E and about 25% of people with M.E are severely affected. Severely affected people live in the dark, because any light is too painful for them. Sometimes for YEARS. I had a friend who lived in bed from aged 14-24. As in, got up occasionally to use the loo but mostly couldn't even manage that. That was her whole life. Some sufferers are paralysed, some are tube fed, some can't endure any touch or noise at all. Some have osteoporosis as a result of being prone for so long. This is children as well as adults, by the way. I think the film Unrest is trying to expose some of that, because it's currently so invisible. Most people have no clue it gets this bad.
These are a couple of articles which give you the reality of severe M.E, if anyone is interested in reading them.
It's also worth watching this short film by a sufferer. It's only 6 minutes long.
Anyway, I don't want to harp on and sorry if I've done so. I just wish the debate around fatigue focused more on how let down women are rather than on how much it might be a psychosomatic illness. My illness gets worse when I get stressed - it's not threatening for me to acknowledge that. There is, thankfully, an increasing amount of biomedical research going on and I'm convinced that's going to snowball as more and more anomalies are found. It's exciting if you think about it. Hopefully what we'll be left with is a)some treatment options and b)some compassion and understanding from the general public as people come to understand what a terrible and serious illness this is. It's absolutely fine if there's also a c) where researchers are looking at how people handle illnesses and what role their mental health plays in their experience of being ill.
I was in the 1st Gulf War in a unit exposed to sarin and given drugs that were experimental.
Gosh!! Wesseley, who has set the scene with how M.E is treated in this country, has also done a lot of work into gulf war illnesses.
It does affect more women than men, apparently, but it is not a women's disease as some doctors would have. Unfortunately this perception has been part of what fed into the ME-as-hysteria trope.
You will all be delighted to learn that women are considered much more inclined towards hysteria and somatisation (that is, physical symptoms that are the expression of emotional states) amongst a lot of the medical profession. I don't know if this has improved in recent years, but it has definitely been an issue until fairly recently. I still see things written that imply that if someone effects more women than men that this is "evidence" towards the view that the symptoms are psychological in origin.
Having gynaechological symptoms are sometimes considered part of the "evidence" that a patients symptoms are psychological in origin. Of course, as it is women who have these problems then it becomes circular logic that women are more likely to be hysterical.
This is an interesting essay into an influential paper by 2 people (McEvedy and Beard) in the 1970's that seems to have started the ME--as-hysteria story (these 2 writers had not met or examined any patients for the purposes of their paper, why bother when you have your mind made up?). The essay quotes McEvedy and Beard:
“…there is little evidence of organic disease affecting the central nervous system…” they write in their summary: “and epidemic hysteria is a much more likely explanation… The data which support this hypothesis are the high attack rate in females compared with males”
It isn't exclusively "women's diseases" that get psychologised, as ones affecting more men than women can also be psychologised (e.g. Gulf War Illness and Parkinson's disease) but it is much more likely if something affects women that this will happen either will the condition itself or in specific cases (e.g. so women with MS in the olden days used to be diagnosed with "hyserterical paralysis" and sometimes sectioned. I don't know if the condition as a whole was considered hysteria, or whether it was that women with it were under threat of getting a hysteria diagnosis. I know there was some condition like this where it was thought more men than women had it, until better testing was available, purely because the women were being "diagnosed" with psychiatric conditions).
Psychology and psychiatry are not like other branches of medicine. They are not a hard science and there seems to be a lot of unsubstantiated claims in the area. Thankfully the house of cards is falling in some areas as the spotlight shines on some rubbish. Unfortunately there seems to be so much rubbish in this area that it could take a while....
It is odd to watch people in the same field have wildly different views as to the diagnosis, cause and best treatment for something. These views can be diametrically opposed to one anther, they can't both be right, yet we are expected to treat them both as if they are knowledgeable experts. At least, for example, in nephrology they can agree that a kidney is a kidney.
In psychiatry a "diagnosis" can often involve circular reasoning. Confirmation bias is a big issue in this field. I suspect that there is a rampant issue with poorly conducted research in this area (I don't have energy to read enough to know how widespread this is so I am going off comments by doctors and scientists that seem to be reliable).
Part of the defence of a ridiculous psychological treatments trial into ME (the PACE Trial, where they changed outcome criteria so that you could get worse on key measures but now be deemed recovered on these measures) was that it was no worse than a lot of other trials in psychiatry/psychology. Not exactly a ringing endorsement of either the trial or psychology/psychiatry as a whole.
One huge problem with this trial is that you had unblinded trials with subjective outcome measures. (basically the researchers could manipulate, consciously or unconsiously, the patient into giving the answers they want on questionnaires. In the case of PACE the whole point of treatment is to change the view the patient has of their illness so questionnaires are unreliable as outcome measures). Though in the case of the PACE trial the brainwashing/manipulation was ineffective even on subjective measures, which is why they had to change their initially planned outcome measures, and drop the main objective measure (activity monitors) to avoid a null result.
Dr Johnathan Edwards has written a brilliant, easy to read, essay on some of the design flaws of this trial (which would apply to other CBT trials in this area). It can be read for free here
PACE team response shows a disregard for the principles of science
One quote from it:
"The way that human nature creeps into the research environment is something all too well known to physicians and pharmacologists. It seems strange that it should be unfamiliar in psychological medicine"
I don't have ME or CFS but I will muscle my way in to say that as a long-term friend of someone with ME and an HCP who occasionally sees people with ME or CFS for tangential things (not for anything to do with their main treatment) one of the few things I feel certain about is that there is a whole constellation of different disorders involved, in rather the same way that there are a huge range of cancers with very different characteristics and prognosis.
I do think the disrupted energy use theory is a useful one though. I remember seeing my friend years ago at a time when her fatigue was really bad. She looked terrible. We had a meal, and she suddenly looked normal, for literally about two or three minutes, and then just faded away again.
Yes I think there is misogyny laced through this at times, though I don't think it's as direct as it used to be. I also am not sure that it's as simple as mental/physical prejudice, it's defensiveness about the inability to treat chronic illnesses.
This is definitely been neglected in terms of research, especially biomedical research . There are some graphs here that shows the problem debortgjemteinternational.wordpress.com/2015/04/12/the-chronic-lack-of-funds-for-mecfs-research/
There has been a lot of manoevering in the UK to make sure most funding there was went to psycholgical rubbish and they were propped up by medical journals, universities etc (the corruption is so rampant, with so many people involved, that it is still going on and people don't even see it because it is just the way it is).
This talk below is worth watching, but if you go to 9.40 in they compare the funding in the US between a few diseases (the picture is a lot worse in other countries especially the UK where almost all of the funding has gone to psychological studies)
<I think all those areas are valid areas of research and are not necessarily about attacking women. I'm sure some have been used to attack women but I don't think it's necessarily the case.>
I think there is a good chance you haven't read these studies, either that or you don't mind poor quality research. The articles might not be about attacking women yet this is what some of them do.
They are writing these articles to advance their careers, throwing women under the bus is collateral damage in this game. I don't think the main aim is to attack women, they are just exploiting pre-existing prejudices against women in some areas of medicine.
<We know that illness can be experienced and expressed differently in different cultures, situations, and over time.>
I think this is (post-modern) nonsense. Physical illness present pretty much the same everywhere, unless there are extra environmental or biological factors influencing the disease process.
<It's useful to consider that sickness can be a stage upon which human beings act out deep truths about life and experiences, some too unbearable to articulate in any other way.>
lol. Would you say this about MS?
<The Cartesian dualism conception (of mind vs body) is common but not particularly medically useful so far as I understand it. Certainly the most interesting ideas in chronic pain seem to really be confronting and rejecting dualism>
Lol. It is always the people who want to engage in denying the physicality of disease (thus engaging in that duality they claim to abhor) that roll out the dead guy to try to try to make their point.
Specialities exist for a reason, or are you saying that you wouldn't mind being sent to a psychiatry and being denied an x-ray if you had a suspected broken leg?
Or how about a hip fracture? A woman with ME in the UK had a hip fracture and she eventually ended up committing suicide as she was in major pain and medics were dismissive of her and refused to treat her.
The autopsy showed she did actually have a hip fracture. The medics apparently got away with it on the grounds that the treatment plan would not have been any different even if they had known she had a hip fracture I can't find a link to an article about this unfortunately. It was a few yeas ago, maybe 8 years or so ago.
Or how about if you had CJD? Maybe you wouldn't mind choking to death as part of your "treatment" for hysteria? www.richardwebster.net/000HysteriaOpening.pdf (there is a cameo in this essay of a letter by Sharpe and Stone defending this misdiagnosis idiocy. They both promote the psychological view of ME. They do not come out well in this)
There is a lot of nonsense being spoken about pain and I would guess some crap pain research (there seems to be rubbish research taking place near me. I am thinking of trying to draw attention to it, though it will probably be impossible to stop it). Hell, they got away with it for "fatigue" for decades, why not spread their wings a bit?
[ME is not about chronic fatigue. That was a deliberate misdirection by psychiatrists. It is rapid muscle fatigability with slow recovery]
There is a movement in the UK regarding hysteria/somatisation being more widely diagnosed (this will affect more women than men, see my earlier post). This is useful for neoliberals who want to cut medical budgets.
<My DH is paralysed from the neck down. There is no prospect of a cure, or even of much of his suffering ever being alleviated because there are no painkillers that can tackle chronic neurological pain - fentanyl, ketamine, gabas - nothing works long term. There's research into this - it's a huge area of investigation - but there still aren't any treatments, and the majority of quadriplegics are young men so one can hardly lay that at the door of misogyny.>
No, but there is vastly more money put into that condition, and he is (hopefully!) not being treated as a malingering hysteric (although those 2 terms ought to be exclusive, they both get used a lot for ME, even by the same people. Heck, this is psychiatry so who cares about accurate diagnosis and contradictory ideas?).
<I also have encountered many many people with chronic fatigue and chronic pain (the chronic aspect is important neurologically) who DO have the kind of fixed, low-insight mindsets that are sometimes described in literature.>
I don't think stupid people are immune to diseases. What is your point? How you do know it is they who have low-insight and not you?
<If that's not you, good for you, but those people exist (and are invading the support fora of quadriplegics btw)>
I don't know exactly what you mean here, or who you are talking about. You get odd people on the internet in every forum. I don't think you should generalise from that to everyone with a condition they claim to have (there is a major misdiagnosis problem in the UK with psychiatric patients without classic ME being diagnosed with CFS or ME/CFS. This unfortunately leads to people then getting the wrong impression as they generalise from these patients).
Some patients with ME can experience paralysis or extreme difficulty with movement, so they are not necessarily unfairly "invading" a space that shouldn't be theirs. You perception might be false and based on ignorance (of course you could also be right about these few cases you have seen on the internet).
<Yes I think there is misogyny laced through this at times, though I don't think it's as direct as it used to be. I also am not sure that it's as simple as mental/physical prejudice, it's defensiveness about the inability to treat chronic illnesses.>
I think some of the misogyny might just be more subtle, and in some cases that is probably not the main driving force (money I think is more of an issue).
There is definitely an issue with doctors getting defensive if they don't know how to treat something, or wanting to dump patients on psychiatry (or anywhere else really) if they don't know what to do with them, or would have to do a lot of work reading up to get themselves up to date.
I think there is classic ME, which might have subgroups but is basically probably one thing, and there there is a much more losely defined and diagnosed CFS.
I have CFS as does my daughter.
The specialist who is treating us said it is passed down the female line.
Could explain it.
I suspect it's become a "bucket diagnosis" because its more prevalent in women and anything women get that's not yet fully understood is suspected of being womb wandering.
My own experience is that I have multiple sclerosis and a crumbling spine. I can't mobilise without aids.
At the point my legs first failed, I was without a diagnosis, but I'd already been investigated for neuro symptoms over several years and there were measurable findings in my record (nystagmus, numb patches, absent reflexes in all limbs).
Despite this, when I hobble-crawled into the GP with this interesting new symptom that I couldn't walk much at all, he was entirely cheery and dismissive, printed me off the NHS web pages about the fibromyalgia and declined to discuss it further until I'd gone away "read those and had a think". Unspeakable man. Several years later, knowing much more about MS, spinal cords and lesions, I still can't make any sense of it other than to say he profiled me by age (nearly 40) and sex. He clearly thought fibromyalgia was all about "ladies of a certain age getting anxious".
I'm not really a fan of the GP gatekeeper model of healthcare now. If medicine is this misogynistic, direct access to consultants should be possible, so at least you're talking to a specialist if you think you need one..
As someone who has suffered for many years from ME I think we have much bigger obstacles than gender. The true fight in my mind is against people who still don’t believe in ME/CFS
The fight shouldn’t be about gender, it should be about educating people about this debilitating and under researched medical ‘problem’ which is often disbelieved which in my experience just makes it worse for anyone experiencing ME/CFS
* I think we have much bigger obstacles than gender. The true fight in my mind is against people who still don’t believe in ME/CFS*
I really think those are two entwined issues. "If you can't see it, scan it or measure it, but a woman tells you she feels it, soothing noises will do."
It cuts across rheumatology, gynaecology, neurology...
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