Best friend's been diagnosed with ME - what to expect.

[ChicaLovesHerLocalGreengrocer]

That't it really. She's 27, and after feeling run down etc for about a year, and going through every possible test, they've finally come out with a diagnosis of ME.

She's feeling pretty shocked, and abandoned, as I think the doctor basically said there's nothing they can do.

Do you have any experience of living with ME? Any advice? Do you know of any support groups? She's in S London btw.

Thanks.

my eldest DD aged 16 has severe ME and is pretty much bedbound. Your friend sounds as if she is nowhere as bad as this thankfully. My belief with hindsight is that pushing yourself to hard can make things a lot worse. There are a lot of websites out there with very useful information. The one we use most is AYME which is aimed at young people upto 25 so not directed at your friend, although you/she might find some of the general information useful as it will still apply. Foggyfriends.org is good with an excellent support forum. Also ME Association, AFME. As you say, there is not much medical help out there but there is a lot of information and guidance on these websites. Your friend is also lucky to have you to support her. Do ask if you want to know anything else.

Thanks Chocoholic, and sorry that your DD is so poorly. As you say, thankfully my friend isn't so bad.

I'll have a look at those websites, and pass them on to her to see if they can help her at all.

Anyone else?

chocaholic..don't despair..I have had ME since I was 17 and was bedbound for 18 months, it did then slowly improve and allow me to have a near normal life!!!

chica - chocaholic has said it all i think...just be positive for your friend, and let her know that things can improve!

(and near normal means I have an 18 month old DD and work as well!)

Have a look here

My aunt had it for years. Diet and supplements did a huge amount to help her, but each individual has to work out their own particular regime.

And every time she thought she was feeling better and did a little bit too much, it knocked her back. She always had to rest much more than she wanted, and she had to fight her own instinct that she was 'being lazy' (that'll be the Puritan work ethic!)

Chica, my Mum has ME and has good days and bad days. On a good day you would hardly know anything was wrong, on a bad day she is bed bound. There are lots of inbetween days too though where she can do one thing such as go to the shops but then it completely shatters her and she'll spend a lot of the rest of the day sleeping. My Mum has found that our local NHS trust offers a support group (we're the midlands though, but I presume they are all around) and through this has taken part in aqua aerobic style classes which are designed to strengthen her. Tell your friend to go to her doctors and ask for all information on support groups in her area. Also google for support groups. they wi;; be around.
I agree with the others about just being there too. Many people think ME is just 'being tired' and can get quite frustrated with the sufferer as they think they should 'just push themselves', they don't realise that reserve just isn't there. Prolonged understanding is the best thing you can give your friend. Good luck and my best of wishes to your friend.

Thanks all. Herecomethegirls - it's great to hear that you have a next to normal life with ME. Such a positive story.

I have had ME for a year and a half but I was only diagnosed last week. I have the odd day where I am so tired I feel as if I have not been to bed, others I feel a bit tired, very occasionally I am bursting with energy. I also get mood swings, joint pain, headaches, a very dodgy tummy and can have memory problems. All my gp could recommend was exercise (which I've tried and leaves me knackered). I try not to push myself too much. Just be supportive, don't mind if she forgets things or looks tired and wants to go home early. Just remember she can't do anything about it and is feeling exhausted.

I have had no personal experience of it but my SIL suffers badly. She is getting better now but basically she had missed out on most of her DD's childhood in many ways . It is terribly debiliating.

She got on top of it by changing her diet. She found an 'expert' originally who cost her a fortune in expensive supplements that did bugger all in the end. But she now eats no wheat, dairy, or yeast. She has had to start eating meat again having been a vegetarian. According the the chap she's seeing now ME is closely linked with candida (at her lowest point she had candida overgrowth throughout her entire body - just agony) and a real risk for blond, fair-skinned Northern Europeans eating a diet high in carbs and dairy. Also can be triggered by stress. No idea how true that is but it definitely was in her case.

Graded exercise (rather than just getting on with something moderately strenuous!) can be very helpful I understand. There should be info on the net. Absolutely not a good idea to push it, makes people significantly worse with a slow recovery from the set back.

Recognising and limiting stressors, so if asked to take on an extra work project before one is finished to say no, not cater for the entire family for christmas, just bake the cake, that sort of thing.

Treating any associated depression, this may be pharmacological, or just feeling supported. There will be a group nearby.

Note of caution though, I think there is a small amount of research that has found that those who enroll in support groups actually make worse progress than those who dont. There reasons for this are obviously complicated, but may be due to those who dont enroll being well supported in other areas of their life, so dont need a group in the first place,and use this alternative support to assist in managing their condition. Or there is a subtle maintanance of a "sick" role because the group becomes very important to the person, and membership requires the inital diagnosis.

this link was sent to my DD, although it describes someone with Lupus, it describes the difficulties people with ME experience exactly.
www.butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf
The amount of ignorance from some people is amazing. Some think if "she makes the effort" she will feel better. They don't get that doing this makes it worse.
Thank you for the positive experiences from some of you. Most of the time, we are positive and take each day as it comes.

Thanks for all your advice and experiences.

I've had a look at the links, and they're very helpful. I especially liked the part of the foggy friends site that describes what it's like to suffer from ME. A real eye opener.

Pinkveto - my friend is the kind of person who will take it on her self to prepare the whole meal for a party, even when everyone says that they'll help. So, she'll have to work on cutting back, and feeling it's ok to do less.

Avenanap - sorry that you have been so ill for so long without a diagnosis. Hopefully now you can find something to help you. Your advice about simply understanding her and being there for her are spot on, and since we don't even live in the same country, are probably the only things I can do.

Thanks all.

chocoholic, I've just read through that link, and it's almost made me cry.

Hi Chica - I had ME about 10 years ago and was also devastated by the dx. I was referred to an excellent dr (Dr DG Smith) based in Essex who had me completely cured within a year and I have had no problems since. (I do have to be careful not to overdo things too often though)

His regime was a strict activity programme (starting with virtually nothing) together with bucket loads of medication. It's not everyone's cup of tea but it worked for me and I don't regret the drugs part at all, after all it was never going to be very long term.

hth

Tigs.

My mum had ME for around 5 years. At one point she couldn't walk more than 5 steps. BUT she has made an almost total recovery - but it was slow.
Things that helped her:

1. Very supportive people around her allowing her the time and space to rest (get anyone who doesn't understand it is a proper illness well away!!!!! (and my experience is that there are Far too many people like this around)
2. Practical help - e.g cleaning etc to stop stressing about getting up to do it
3. Yoga - when Mum was starting to be able to do more she found this gave her a chnce to contro her own body.
4. A range of vitamin and mineral supplements......don't know how much they did but she's scared to stop taking them.
5. ME support group.
6. Someone to talk to about how rotten it feels to not be able to do anything. And oranisning things she could do like picincs (right by the car!!).

When she is ready getting out and doing things can really help lift the depression,

ME is a auto immune disease so she would never now do certain things e.g have vaccinations and tries not to over exert herself. But she is OK - and now a brilliant brilliant active granny!

Hope this helps!