to be exhausted with my friend's Chronic Fatigue Syndrome?

[LemonDifficult]

My friend has been diagnosed with CFS. Over the past 6 months or so she's been struggling with tiredness. She's had blood tests which found nothing, she's looked into herbal medicine and so on. A couple of weeks ago the GP said it's CFS.

During the past few months she has become more and more self absorbed. She is single, she wants to meet someone and have a family and is feeling the pressure as she's in her late 30s. Along with this taking up much of our conversations, she talks constantly about her tiredness, or just other aspects of her life. Almost nothing about me, except on a couple of occasions some bitter digs about how parents are so rude/thoughtless/whatever. I'm sympathetic but beginning to get sick of it. I'm also sad about it because we have been great mates. I try, I really do, but my frustration with her is getting the better of me.

If she was to ask me I'd say I think it's depression or stress by another name with sleepy side-effects, but if I so much as hint at that I get the brush off. In my view, she needs a serious amount of counselling to deal with the trauma of losing both her parents when she was young and various other issues that have come up along the way. She has barely had a proper relationship - the last one was 12 years ago. That the CFS might be in anyway be a MH issue is a non-starter with her.

So AIBU? Is this CFS absolutely out of my friend's hands? And at what point am I allowed to say, 'I've done my duty as a mate and listened to how hard it is not being able to get up until noon. Now I'm fed up with your jellyfish comments about the evils of 'screaming babies' or whatever'?

Once I'd waded through all the nastiness and debates about ME on this thread, I found it very interesting. The OP's friend - and others mentioned on here - sounds just like my experience.

One of my best and oldest friends has had ME for more than 10 years. She can't work, had to move home to live with her parents (we're now in our late 30s) and generally has had a very difficult, traumatic time.

About five or six years ago, she started finding it very hard to deal with friends having weddings and babies. Understandably, she was feeling left behind. She became very self-absorbed and unsympathetic and fell out with lots of people. As an example, when I was made redundant from my dream job, that I loved, and was crying, she shrugged and said: "You're not going to starve, are you." But she was my friend and I loved her so I stuck by her, seeing her regularly, chatting lots on the phone, researching ME and finding new ideas for her to try, helping her practically by driving her places etc etc blah blah.

When I got married, I asked her to do a reading at my wedding. She said she'd think about it, then emailed me to tell me I was a terrible friend for not asking her to be bridesmaid. I was very upset but we sorted it out (mostly because I apologised) and she actually couldn't make it to the wedding at all because it was quite far away. When I was pregnant she asked me to go round one day, sat me down and told me how horrible I was. And that not only did she think that, but another friend agreed (that friend actually phoned me later to tell me it wasn't true!). Then, when my son was 8 weeks old, out of the blue I got a letter from her, spelling out in great detail why I was a bad friend. I was devastated and hormonal and knackered and cried for a whole weekend. I've not spoken to her since. But I miss her massively and often wonder how she's doing.

Anyway, that's a whole lot of waffle leading me to my point, which is that having an illness like ME is a horrible thing. But it is not an excuse to be nasty. I think if you genuinely feel you've given your friend all the support you can, then perhaps it's time to walk away. But don't underestimate how hard it is for her, how her life is on hold and maybe she can't see any way out of it. Could you bring up the subject of counselling? Maybe find some recommendations for her? Has she tried any therapies? There are all sorts out there, some work for some, some don't. Try googling and see if you can find anything that might help. Giving her some practical help might make you both feel better and help you rebuild your friendship. Keep us posted, I'd like to hear how you get on.

How has the friend in the OP been nasty though. All the op has said is that she bangs on about her illness and has made some comments about how young kids can be annoying - which the op, for some reason, took as a direct dig because she's obviously the only person in the world with kids .

Your friend sounds like a nightmare though mrskbpw and you are best off rid.

An interesting digression: this article (Guardian) about how researchers into the causes of ME have in the past been bombarded with hate mail and even death threats for suggesting that the causes of ME may be even partly - note, partly, not wholly - psychological and not purely physiological.

It's clearly a debate that provokes some very strong feelings.

Here's more about a Lancet study suggesting that the prognosis for ME sufferers was better if they were encouraged to do more exercise than they thought they could cope with, along with a bit more about the controversy it's created.

I find it interesting, as someone noted earlier in the thread, that it's seen as more valid somehow to have an illness with a physiological rather than a psychological origin. The separation of psyche and soma is centuries old in Western culture, and very visible in medicine; combined with the orientation of modern science and - arguably - to some extent the vested interests and huge research capability of the pharmaceutical industry, it serves to privilege physical over psychological ill-health.

Evidence of the interconnection between psyche and soma - for example in the amazing power of the placebo effect - is ignored. If there's a physical cause, it can be cured with a pill; but if it looks like a psychological cause, it's 'all in the mind' and therefore devalued.

This is surely part of the background to those posters on this thread who have reacted angrily to the OP's concern that her friend might be able to affect her condition by approaching it with a different attitude. Effectively, the privileging of physiological over psychological illnesses leads those who are striving to have a condition with no obvious physiological cause taken seriously to become defensive when the privileged 'this has a physical cause' position is seen to be challenged. So the OP, who simply wonders if her friend might be able to take more positive action to help herself, is taken to be implying that her friend is malingering, perhaps lazy or even deluded. In any case the suggestion that the OP's friend is anything other than a completely powerless victim of her physiologically-based condition is seen somehow as denying the impact of that condition.

I'm not sure this is reasonable. If we can accept that placebo cures can be remarkably effective, or that people who are unhappy are more prone to catching colds, then it's conceivable that the OP's friend may be able to affect her condition through her mindset. That doesn't mean she can just 'think it away', but no-one is suggesting that. To declare that the OP is some kind of stony-hearted bitch for daring to imagine a connection between her friend's psyche and soma, and for wishing her friend might help herself by doing the same, just seems a bit extreme to me.

OTH, thank you!

Definitely what I meant.

Just to be clear, my friend HAS been unpleasant. She never invites me out, even with mutual friends - 'it's just a single girl thing'- and on, and on. There's been a sea-change in her behaviour, recently ranting at me about how little time I give her without my children (not true, and she did apologise). In the same rant she did say she was jealous of my children. (Not my fault, and I'm not smug either).

I was diagnosed as having CFS in my 20's.
During the worst times, I slept most of the day and night with just the odd hour or so up and awake, my whole body ached and I had no energy to do anything, just getting dressed and washed was an uphill struggle.

I didn't have CFS, I was depressed.

My body packed in because my mind was overloaded.

I have no idea if your friend actually has CFS or not but I do know that a lot of people prefer to have a physical diagnosis over a mental one IYSWIM.

Psycological I meant! Not mental?!!

I think you might want to ask why researchers into mental illnesses such as depression, bipolar and schizophrenia are not complaining about receiving hate mail, despite those conditions actually having paranoia and psychosis as symptoms, which you would think would lead to rather more aggression.

I kept a very open mind about psychological involvement for some years, right up till I encountered the work of some of the people complaining of death threats.

Then I started reading their work ? at which point I discovered the poor calibre of their science, their rather political behaviour, and their enthusiasm for their model causing them to ride roughshod over evidence.

I don't know what causes ME/CFS: no one does ? or even if it's one thing.

What I am damn sure of is we won't learn the answer from some of these people.

Tobey you are talking absolute bollocks. No-one can think themselves out of being ill - they can have a positive attitude, which can help with convalescence and dealing with living with a chronic illness but they can't magic it away with the power of thought.

I am a bit concerned about you actually. You say the following:

'I actually fit the profile of CFS to a tee (depression aside). I am completely unable to go down the "Oh, I've got CFS. I can't possibly work/go up the stairs/exercise/look after the children" route, as I've seen done by so many people, because I don't have a choice in doing those things.

Yes, I'm tired. Yes, I am in pain every day. But I'm buggered if I'll go and get a diagnosis so that I can use it as an excuse not to do anything.'

If what you say is true I am warning you now that you are being extremely silly and playing Russian roulette with your health and happiness. Whether you can 'afford' to be ill or not your body is telling you something. If you do have CFS/ME (regardless of whether it is diagnosed) and you continue pushing yourself in the way you are implying you do then you are heading for a complete physical breakdown followed by months if not years of being bedbound at worst and housebound at least and none of your magical thinking powers will help you avoid it. It is widely recognised that many people who have ME/CFS were in fact very high achievers/perfectionists beforehand and that their inclination to push themselves to the limits contributed to triggering off their ill health.

By being so determined not to have ME/CFS you may be forcing your body so hard that you are running towards it with open arms.

Oh, and by the way, I am qualified to make those comments.

I've read through those articles - thanks, OTHM and also to everyone else who's posted links, I'm going through them.

Kitty - was there anything that a friend could have said or done for you when you were that depressed that could have significantly helped?

Tianc, do you have experience of CFS, or are you a scientist?

Also, I'm interested in what you mean by researchers being 'political'?

CelticStart - i disagree with you from personal experience. your body is not telling you something, you are interpretting that: a physio will ask someone to do any exercise that causes discomfort because the right exercise is good for you.

i had the same symptoms as CFS for about 2 years. i exercised even when i was so tired, before i even started, the thought of exercising made me cry for an hour. i sometimes failed but never gave up.

i probably was boring to my friends at times but i would not have blamed them for finding me boring. they arent perfect, but neither and i.

So when your body tells you you want to vomit or go to the toilet or push out a baby it is not actually telling you something you are just interpreting it that way? Absolute piffle! Pain and exhaustion are warning systems not something that your body is using to spur you on. When it wants to spur you into doing something it gives you nice sensations - such as when it wants you to make babies it encourages pro-creation by the existence of orgasms.

I am glad you got better but the fact that you did it by pushing yourself means you did not have ME/CFS because it is widely documented that ME/CFS responds to pacing and not pushing yourself to the limits, that is about the only thing that the medical profession can agree on with regard to ME/CFS. You are not some superhero who, through mind over matter and dedication, beat ME/CFS. Pushing yourself through physiotherapy is something entirely different and is a bit of a straw man in this argument.

Yes and yes (only first degree level and with a specialism in scientific methodology and the practice of science, but not working professionally as a research scientist. Which still makes me more qualified in the theoretical side than say nurses-turned-medical-researchers, and IME more clued up than some GPs who are practical healers rather than scientists).

In practice, all research decisions are effectively political. They are a reflection of the paradigms of the day and of who provides the funding and why. Which is why the BMJ is no longer publishing articles on the difficulty of obtaining medicinal leeches (as it did on 9 Sept 1846), and why obesity typically gets more funding than malaria in the West.

And even within broad frameworks like "we've decided to research cancer," there is substantial jockeying for who actually gets that money, so good politicking skills are often rewarded. 'Tis the nature of the game.

Erm, do you want me to warble about the specifics? It involves specific people, so I'd want to spend a bit of time making sure I'm phrasing things so I can reference them to the hilt.

Celtic - if you run, particularly when you warming up, however healthy you are, your body tells you to 'stop'. some people listen to the stop message & some dont.

i would argue the intense, short messages you refer to (push Mrs Celtic, or the vomit urge) are completely different than the general way someone responds to a challenge.

your attitude affects your actions, your actions, affect your outcome.

i dont experience life as someting you are not able to influence most of the time. & the things you cannot change, trying your damnnedest to change them, makes them more bearable for me.

at the end of the day, you might be correct, but i prefer life as i live it (& you are welcome to prefer it your way too!)

do you think she actually wants to spend time with you at this point in her life, Lemon? You said that she didn't invite you out, and she's making comments about disliking children and people with children. Do you think that she might be finding you rather hard to be with at the moment, the CFS aside? I wonder if you should stand back and wait for her to contact you. I'm guessing you've been trying to keep in touch because of her illness, but maybe she wants to be with other people at this time.

Oh God, Grendel, you might be right. Yeah, she might not want to see me. Fair point and I'm going to give it some thought in case I'm not picking up the right signals.

OTOH, I think she does want to be in touch a bit. She does spend hours talking away, but mostly, you're right, after I've contacted her.

Sorry, the above doesn't explain why I'm singling out some ME/CFS researchers for political behaviour, when everyone's at it.

That departments or individuals are good at politicking certainly does not make their science wrong.

But where there's a general lack of good evidence ? as with ME/CFS ? the success of one given model over another is quite possibly completely explained by politicking, cos it certainly ain't by overwhelming weight of evidence. (And actually this also happens where there is good evidence, but the politicking is very powerful. Galileo had an opinion on this...)

So in this context self-interested behaviour by researchers doesn't of itself prove anything, but does make you go Hmm.

lemon
Kitty - was there anything that a friend could have said or done for you when you were that depressed that could have significantly helped?

I've just read your posts again and I think you are being a good friend. You have not given up on her even though she is not being a good friend to you.

She insists that she has CFS, but she's behaving like someone in despair. Who knows what came first - The CFS or the depression. She does sound depressed.

She's being a crap friend : selfish, boring, self obsessed, bitter, negative, jealous.
I bet she knows this and can't help herself.
This is the problem, it's a cycle of self destruction.

So, what can you do?
Well, there is nothing you can say or do to make her feel better physically or emotionally but you can stick with her.
It sounds like she needs you but at the moment she offloads on you and little else.

She needs to know that you love her and will be there for her but you also need to point it out if she is being out of order ( for example, about your life/ DC).

Don't let her get away with being negative when it's getting too much. Tell her how you feel.

She may get angry if you confront her with things or disagree with her but grow a VERY thick skin and stick to what you believe is right.

All I can say is that when I was ill ( grief at loss of a parent and break up of a relationship, loneliness, uncertain about the future) it felt like I was carrying a ton of misery around with me and I was at a loss as to what to do.
I was bloody miserable company and fought very hard against my urge to spread that misery as far and wide as I possibly could!!

Your friend needs to know that she has no right to make everyone miserable but at the same time deserves compassion.

I wasn't meaning to be mean, btw! It's just something wise my dad once said to me when I was trying to support a friend. he suggested that maybe my circumstances tended to remind her of what she hadnt got, rather than what she did have. Now, things have changed on both sides and we're close friends again.

I think GrendelsMum said much better what I was trying to say: the dynamic may just not be working between you because of other reasons than just the CFS. However, it may well change again as things change for her.

As for her not wanting to see you- I cut off from a lot of people, isolated myself, didn't contact people- but I was so glad my good friends kept in contact with me despite me being a miserable, useless arse of a friend. :o

Agree with your last post though Grendel- who knows what's going on in her head!

YABU. How would you feel if the tables were turned and you had CFS? I'm assuming you would want friends you felt you could talk to as much as you needed to?