Is chronic fatigue considered a Lady Disease?

[Ava6]

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?

Sorry don't have the energy to read all the replies just now, but wanted to say 'join the club' I've had ME/CFS/Fibromyalgia/etc for 15+ yrs, it is from an auto-immune virus (nothing hereditary) and can totally sympathise with how you feel as I'm sure other ME/CFSrs do as well.

My advice is 'not' to push yourself this just makes it worse, just do what you can, when you can and listen to your own body. While some people may be well meaning (I've had them too) unless they have the condition they don't understand and will tell you to push through the fatigue and exercise your brains out!! This set me back months/year as it came from a GP who said he knew 'all about' ME/CFS, but in reality he only thought he did and I was much worse for pushing on when I should have been resting.

The gender thing I've not heard about, but I know quite a few males with it so don't put too much credence on that.

Over the years I've learned that trying to get a good night's sleep is good, but due to pain levels that's not always possible and on those days after interruped/lack of sleep I need a nap in the chair usually after lunch. Even if I don't 'sleep' in the chair, just to sit and rest is good enough to carry me through until nightime.

Take main medication as required and eat a good, nutritional diet. I keep some frozen dinners in the freezer for the days when I need to eat, but too tired to cook a meal. Friends won't want to know you, but I don't need friends who don't believe how much I'm suffering. They only see me on a good day and think that's how things are 24/7.

All the best, sorry the news is not better. Maybe some day there will be a 'cure' but I'm not holding my breath!

Definitely affects women more.
Women are also more likely to have undiagnosed underlying conditions which cause exhaustion.

I am 100% certain that it's not psychosomatic because I've never felt better mentally in my life. Before I had this my physical energy was normal in the midst of the worst depression. Now it's in reverse.

I've also learnt the hard way about not pushing myself. I star feeling woozy and ill if I do. It doesn't feel like normal exhaustion. It feels like something's wrong chemically. Usually I have 2-3 hours a day I can function during (not without struggle) after which I am useless. The diet advice is a catch 22 because I don't have the energy to cook or shop for anything healthy (and my carer barely manages to feed me standard food. But I have noticed that eating gives me a very brief burst of energy.

I've become at peace with the condition, but no one knowing anything is incredibly frustrating.

@lowfatvegan I think this is an unwarranted response where you seem to be making me a totem for a lot of people who have hurt you. I haven't hurt you. I don't know you. I have my own small life experience of medical support given to people with chronic pain and fatigue but culturally undisputed reasons and all I'm saying it...is actually THE SAME advice and support! So it's not like there's a secret room where the privileged and lucky gold star disabled are getting treatment but you can't get in there because no one believes you. They probably DON"T believe you and that definitely is shit and really hard, but there isn't a different answer when they do.

Anyway, I simply tried to share a little bit of that in the most delicate way I could because I do think it's helpful to know. I found that helpful information (though obviously will never do so again here!). I didn't generalise to "everyone". All diagnoses of exclusion clearly group together different populations so it would be illogical to do so.

Extreme difficulty with movement is actually different to spinal cord injury and your leap to the defence of these people unknown to you is so tribal I could weep. Not everyone is you. Spinal cord injury has physical consequences (for example: skeletal decalcification) of which you are clearly unware and no, even not being able to walk is not like being quadriplegic. That's not dismissing your pain or your struggle. It's just saying it's not the same struggle and deciding it is is from an internal sense of your own pain is exactly what I was describing as low insight. That's all.

Bye.

Living female in general is freaking exhausting and depressing. Women may have psychosomatic conditions, but that's a consequence of the world being hostile to them and their bodies expressing that stress; not because they are hysterical females. It never ceases to amaze me that men are reluctant to go to Drs when medicine is rigged in their favour!

I just wanted to add that i went to the Dr in Jan this year with a very sore wrist affecting my ability to type/sew etc assuming he would say carpel tunnel and i'd have a steroid injection or something & keep going.
He referred me to a rheumatologist who diagnosed sero negative RA and put me on a very high dose of methotrexate. 6 months passed, i put on a stone, felt like weepy shit all the time, kept falling asleep. i kept going back & he said now you have fibro & CFS as well - here take more drugs.

I wasnt happy so tried weaning myself off them. I gradually improved so went back to the GP who referred me back again. I saw a nurse who wanted to up the MTX again so i would need it injected. I refused & was seen by yet another consultant who looked at my records, gave me a full examination and said i didnt have RA, fibro was most likely a result of the ongoing lower level hip/shoulder pain i have managed for years & the CFS would pass once the MTX (chemo drug) left my system & he referred me to a chronic pain clinic.

CPC was an absolute joke- what a waste of 6 weeks travelling an hour each way to find myself in front of a clinical pyschologist who felt that discussing my narcistic mother & abusive first marriage to the point where i was sobbing then suggesting that all my problems would magically disappear if i just practised breathing deeply & mindfullness.

So now ive been poisoned, labelled as a hysterical nutter & i still have a very sore wrist plus a massive distrust of anyone in the medical profession. Feel massively let down by the system with no idea what to do now :(

Thanks Battleax for your comments.

You wrote:

When you talk about chronic fatigue, what exactly do you mean? I'm currently sleeping 16 hours a day and not fit to do much when I'm awake. Is it sleeping a lot or feeling exhausted while awake?

I am interested in this discussion, but I don't think I have anything useful to add

I have had fatigue and other symptoms for approximately 3 years, was diagnosed with CFS a year ago. I feel/felt really cross about being given CBT and groups which tackled 'problem solving' and prioritising, pacing etc. I felt we were treated like stupid children

Anyway, I now have a diagnosis of endometriosis. I am waiting to see if treatment will resolve my CFS. My gut feeling has always been that there is a 'cause' to the fatigue, some illness which just hasn't yet been diagnosed. If that IS the case then diagnosing CFS is a cop out and dangerous and committing people to a lifetime of not getting to the bottom of their illnesses

I do know of a handful of men who suffer, but those on the worst end of it are usually women. To be honest since it got the title Yuppie Flu & that psych made his thoughts about it known, next to nothing has been done research wise.

I have it secondary to other illnesses, so in a weird way I'm lucky as I don't really mention it, I just deal with it. I feel for anyone who gets it as say a post infection illness as from what I'm aware, they use amitriptyline or gabapentin and that's about it.

For me I can do the most menial of things and be set back quite a while with it.

A good thing I saw was the difference between sleep and rest. Sometimes when we wake up feeling crap it's because we still need rest. Not that sleep has been unfulfilling. Although I wonder if maybe there's an associated sleep disorder.

They had a programme about sleep issues, one woman had narcolepsy but wasn't falling asleep how you'd expect. She had meds for it, by the end of the programme she was accepted for this expensive drug that's a stimulant that should help her stay awake. To me she presented like a CFS patient.

Being on various groups, one thing or two things I picked up on was how people rage it's ME not CFS. Suffering is suffering and I don't think anyone is trying to minimise that by calling it CFS. Along with the strong belief if you have a remission or even get cured then you didn't have it.

There's a group on FB The World of One Room. The young lady on there went from being bedbound to walking down the aisle. She still has health issues.

The defensiveness doesn't really help, if you're defensive to your GP or consultant, I'd imagine they'd question why it's such a big thing. Not minimising how awful it is, or the way some healthcare professionals are about it, but Dr's can say the wrong thing to someone with cancer for example, it happened to someone I know. They just thought what an arse and didn't see that Dr again. They died a few months later.

The best thing to do is listen to your body and not worry how others perceive things. You know the truth.

I like the neurologists ive met but I do think in a hundred years we will look back on neurology as it is practised now and feel that it was like the Bronze Age.

Being on various groups, one thing or two things I picked up on was how people rage it's ME not CFS. Suffering is suffering and I don't think anyone is trying to minimise that by calling it CFS

Then I'm going to say politely that you aren't aware of the politics around this illness. There is a group of psychiatrists who believe that fatigue happens because people have 'false illness beliefs.' Instead of being regular, robust pepple, they indulge in their symptoms and drag out being ill. As a result of staying in bed their bodies decondition and they get iller and iller. They do this in part to get attention. The name 'cfs' is thus designed to minimise the illness. For many severe sufferers of M.E, fatigue isn't even their primary symptom. The name cfs is akin to calling a brain tumour 'chronic headache disease' or heart disease 'slightly dodgy tickeritis.' Patients have been trying very hard to get the medical profession and society at large to realise that not only is this a real condition but that it can be absolutely devastating. Names matter.

The defensiveness doesn't really help, if you're defensive to your GP or consultant, I'd imagine they'd question why it's such a big thing.

This just seems victim blaming. People seem to have quite a strong desire to make things the fault of the patient on some level. I'd guess that's a protective urge. I've seen many doctors over the years. Some are brilliant. Some are extremely rude abd dismissive and think you're an hysteric because you have fatigue. I've only ever been polite to doctors when I've visited them. I have many friends with M.E who've had dreadful experiences too and they're all lovely, educated, polite people.

It isn't the case that M.E patients are just unusually combative or defensive. We're a vulnerable (exhausted) population of patients.

*It should be noted that "Chronic Fatigue" is NOT the same as "Chronic Fatigue Syndrome or ME/CFS" as it's called these days .

They are different and although the main issue is debilitiating fatigue , ME/CFS comes with a whole host of other debilitating symptoms.

It is important to recognise they are different *

copperkettles @12:58... your post was a bit of a light bulb moment for me. I hadn't thought before, about how the name is really minimising of the illness

I had a whole survey to fill in once about my 'health anxiety'. It was really obvious what the researcher was thinking. I never ever suffered health anxiety before CFS. Danny straight, I am anxious about my health NOW

The illness CAUSES MH issues. Not the other way round

Marking my place to read this later. I have chronic fatigue secondary to a load of other health shit (Eds being one of them, Ive seen it suggested that a lot of cfs are misdiagnosed and actually have Eds)

Apologies in advance for the length of this reply. I have split it into a few parts.

No this is not what I was doing. You wrote something I disagreed with and I answered it. There was no proper way of doing it without quoting specific bits (though I realise that it can come across as confrontational to the person replied to when done).

Sometimes I prefer to quote people directly as if I summarise in my own words it runs the risk of mis-citing or putting an emphasis where the writer didn't mean to (or sometimes people pretend this is what has happened, even when it hasn't, and it become necessary to go back and quote anyway).

I haven't had too many bad direct experiences with doctors (although this is partly as I avoid them as much as possible).

No we don't know one another, but you were coming across to me as saying misleading things and backing up prejudices about patients, and I was challenging that for the potential benefit of other people reading the thread.

Continued...

I haven't had any major problems getting doctors to believe me when they actually meet me. The problem for me is more at the policy level, and lack of money for research.

There are good treatments for some conditions. Look at how far treatment for HIV has come. ME/CFS rose to prominence soon after HIV did (this was probably partly the reason ME got neglected, as it was overshadowed by HIV, and also the panic over money as HIV was potentially going to cost disability insurers millions and they were determined not to be hit by another unexpected massive bill).

I do think there is an issue with lack of options for some chronic conditions. I know there is not a nirvana out there for chronically sick patients.

But the medical world is a different place if you are treated by a doctor that knows something about your condition versus one who knows nothing, and having a doctor who thinks you might be faking it, versus one who believes you. I don't see how anyone could dispute this.

If attitudes towards ME changed there would be more biomedical research, less crap research, and hopefully patients would be less likely to suffer overt hostility and abuse while in hospital (which seems a common enough occurrence). Maybe you just aren't aware of what happens to people so that our concerns seem to be over-the-top?

I have a very good GP myself, but when she was away on maternity leave the doctor who replaced her was awful (not just with ME patients). I had had an appointment with my regular doctor but she had to leave and I ended up with the new one. I needed to get something signed so I was not in for a normal check-up. When the new doc heard of my diagnosis she said immediately "well it is not something I would diagnose" without knowing anything about me (or ME clearly!). Then she decided my autonomic nervous system problems (basically rapid heart rate when standing, due to problems maintaining circulation) were anxiety . Standing up anxiety, maybe they could add that to the DSM I didn't go back to the doctor until my own doctor was back a few months later. I don't consider this a terrible experience, it is more in the realm of amusing anecdote, and the sort of thing I laugh about, but how that doctor dealt with me was totally different to my own GP because of an attitude difference about my underlying condition.

[Sorry for all the posts in a row. It was one long one which made it harder to read. To the mods, people with ME normally find shorter things easier to read, and it is easier for them not to get lost in a longer piece. This is also why I have short paragraphs even though it lengthens the posts]

Continued....

Continued:

I did say that stupid people were not immune to disease, and that you get odd people on every forum, and I said you could be right about those particular people. I don't like everyone with this condition, but it doesn't mean they are somatising.

You did speak about them in a particularly negative way ("invading"). I find it hard to believe that many ME patients are joining forums for obviously unrelated conditions (though you didn't specifically say they were ME patients, but you said Chronic Fatigue and I wasn't sure whether you meant the symptom of CF or the condition known as CFS).

In fairness to you I also think (on the surface of it at least) that is a bit odd that people would join a group for people with for a totally different condition (I wouldn't do it unless I was looking for information for someone else, or something very specific I thought I could find there). But then people on t-internet can be a bit odd.

< Spinal cord injury has physical consequences (for example: skeletal decalcification) of which you are clearly unware and no, even not being able to walk is not like being quadriplegic>

I do know this, I was just trying to give these people the benefit of the doubt a bit, which I normally try to do. There must be some reason they joined these forums, and it may not be as ridiculous as it might appear to someone who might think ME is about fatigue (I mean people in general not necessarily you). But if you find people are on there being disruptive you should complain to the moderators.

I help run a patient group and sometimes I would get inquiries from people without ME. I try to help where I can.

We get people without ME sometimes joining ME forums also. I don't think this is a major problem unless there are a lot of them and they take up a lot of the energy or time of the group.

But if you feel there are people on forums who are either causing a problem, or are even just making you feel uncomfortable, then you could speak to a moderator about it.

last one tonight I promise:

I missed this in one of your earlier posts (about treatment):