Anyone with experience of ME/CFS?

[northender]

I'm desperately trying to help my friend who has had health problems for 18 months. Any advice on where she should turn next would be appreciated.

Prior to all this she was a bit of a fitness freak running marathons in 4 hours, previously playing football, hockey, tennis at decent levels (had to retire due to dodgy knees). Then she started with balance problems and a whole host of other stuff. She has had extensive investigations by a neurologist and an ENT consultant all of which were normal/negative. In the end the neurologist said as everything is negative it must be CFS.

When she then looked for more info on CFS it fitted perfectly and she I think felt that just to have a diagnosis was progress. The neuro referred her to a general physician to check he hadn't missed anything. She then had an awful consultation with him where he was openly sceptical of the CFS idea and put her on Prozac. He has now written to her GP saying she does not have CFS she is just depressed

She phoned me today after this appointment in bits (not like her at all) but I don't know what to suggest to her to do next. She still manages to be active (gym and swimming) but nothing compared to what she used to do and she has worked on light duties apart from an initial 3 months off sick (works for the NHS).

I'm convinced she has CFS but you can't self refer into the CFS service. She admits she is depressed but that is a relatively recent thing due to her frustrations regarding her physical limitations. I think she needs to see a consultant who is sympathetic to CFS and she would be prepared to pay for a private consult now I think (we are in the NW). It breaks my heart to see her in this state, she has a supportive dh and dc (14 &11). She is now worried (rightly so imho) that work will try to retire her.

Any contacts or ideas would be most welcome

Thank you for reading.

Hi. My DD (17) has had CFS/ME for 2 years. She is still severely ill ie housebound but was bedbound at one point. There is still a lot of ignorance around regarding this illness and trying to blame it on psychological causes, rather than accepting it as a debilitating neurological illness which of course has psychological side effects. Your friend needs to learn to pace herself and may (as an ex fitness enthusiast) still be pushing herself too much. I think the key with pacing (which has been very successful with my DD) is that the person should only do 50% of what they are able to do. This gives the body a chance to "reboot" for want of a better description. There are a number of good websites/support organisations out there - but try www.meassociation.org.uk and www.meresearch.org.uk to get started. Your friend is lucky to have your support.

Thanks for that. for your dd but good that she's better than she was. The advice about pacing is useful though convincing her of that could be interesting. I managed to speak to the physio who runs our local service today and she says you don't need a diagnosis of CFS to be referred and that providing a number of blood tests have been done then they will take a GP referral and they will diagnose.

I need some advice from other mums in this position.
My daughter(Y11) has had CFS for ten months and we have had a similar experience with GPs. She was referred to a consultant who diagnosed ME/CFS after 2 months, then discharged her after 3 months saying she would improve gradually. She hasn't. She's fed up and we get nowhere when we see the doctor who just says go for a four mile walk or swim. Pacing is good in theory but I find it hard to keep her going, especially after she's had another awful night's sleep.
Is there any point in pushing another referral? We have explored LP but she's not convinced by all the disclaimers she has to sign.

There is a longterm thread under Children's Health on this very subject - do come over - can't remember the exact title and having a few computer problems so can't flit back and forth to find the exact name. Scroll down a bit and you should find it. Some of the DDs of posters have done LP very successfully. My DD (would be Y13 but stopped school at Y10 due to being so ill)like yours wouldn't consider LP but has been doing the Perrin Technique very successfully. Also have you investigated support groups - my DD has had a lot of support and made a lot of friends through AYME. You will find lots of information on there. Your DD should have ongoing support, not be discharged. This sounds totally against the NICE guidelines to me. Not sure how badly affected she is but pushing herself to do a long walk or swim will not help, that is appalling advice. Yes definitely push for another referral - with choose and book you can opt to see anyone anywhere. Hope to see you over on the Children's Health thread but will look out for you here as well.

I did the lightening process last year, it was useful to a point but remember it is a program not a treatment. To be honest it is just positive thinking and having read a few Paul Mckenna books it is very similiar.

Hi. No experience of adult with CFS/ME, but another mum with a teenager been ill for 21 months now. Just wanted to say that there are helpful doctors out there who understand this condition. It is worth searching for one.

Griffpopshere's the link that Choc was saying about. We have all been through it with DCs and support each other. Come and say hi.

I have M.E./CFS and I too was very active before I got it. If she is still going to the gym and swimming I would say she is doing too much. The nurse recently noted on my records that I should not be doing any exercise.

In my experience, the more you push yourself with it, the worse you will gradually get. It took me years to learn to live with it and to know my limits. I have had it for about 8 years now. I can manage but it is because I limit my activity a great deal, quite hard with a toddler but I refused to let it stop me having children.

I was told by a neurologist that "it is just depression" and that I was only referred as my doctor was a woman, he said a man wouldn't have bothered referring me. I wish I had complained. I went back to my doctor and she referred me to a phychiatrist who told me I was not depressed and it was definately M.E./CFS. I did get depressed, like your friend, but that was a result of having this debilitating condition. Many doctors do recognise that if you have M.E./CFS, you are likely to get depressed because of the huge change in lifestyle and general feeling of total crappyness.

I would advise your friend to go back to her GP (see someone different if hers isn't sympathetic to M.E./CFS). I was fobbed off by different doctors and just kept seeing someone else until I found someone who was prepared to listen and accept that just because the blood tests were clear, it didn't mean that there wasn't something wrong.

I have had Cognative Behavioural Therapy which I didn't find helpful at all, mainly because the person I saw said "oh I get that" to every single symptom I mentioned. He didn't have M.E. I also had a group thing with an OT a couple of years ago which was good for someone who is newly diagnosed and needs to learn about the condition and their limits. It wasn't overly helpful for me as I had already read up on it and some people in the group used to go on and on about themselves and analyse every little thing which wasted a lot of time. I could never get a word in. That was done as a referral from my docs too.

Thank you for the thoughts. I am struggling to find the other posts so will stay here for a bit.
DD is able to do some school - it's really erratic so we are working on a combination of lessons, home coursework and maybe a tutor.
Have finally got somewhere with Doc who admits Primary Care isn't good in our area. She was tough with DD - it seemed a bit brutal to ask why she could come to the docs but not go to school, no concept of how much energy it needs to go to school with any semblance of teenage pride in appearance not to mention the minor point about learning- but ultimately really helpful, particularly in her understanding of CFS as a physical illnees with some frustrating depressive side effects and is investigating more sympathetic specialists and has stopped advocating all that exercise

DD finds the teenager/CFS sufferer conflict really hard.Thanks for the advice about AYME. DD has found a Teaching Assistant at school who had same at Uni and is finding that helpful. Will look into Perrins - thanks.

griffpops - no pressure, but click on these words if you wanted to pop over and have a nose! - it will open in a new window.

I had CFS about ten years ago. I had an identical response from a consultant physician - wasn't in Essex was it? Anyway, in the end I found my way to the wonderful Dr McManners who (then at least) consulted in London from the Hale clinic. My main issue was zinc deficiency, coupled with chronic digestion issues. I got better, slowly but am well now. It is a very real disease & try not to let anyone tell your friend otherwise.

There may be a role for anti-depressants in treatment though. I wouldn't dismiss them out of hand. Probably should be hand in hand with ther treatments too, however.

Hi everyone, I've just joined Mumsnet and nosing around on the threads I've found this one.

I've had flare-ups of ME (I thoroughly dislike the term CFS, it was invented in the mid-80s by US health insurance companies trying to avoid paying out on claims from sufferers...) all my life. It was probably triggered by the measles jab at age four, after which I got a bad dose of measles. I then had time off school at ages 9, 14, and a year off uni at 19/20, with viral infections from measles-type viruses and subsequent ME symptoms. I've then been more or less healthy until a couple of years ago (that's nearly 20 years, gulp!), when I had the worst bout yet. I ended up nearly housebound for a year, walking with a stick, and with a number of other health problems which seemed to be connected with the ME.

However, I'm now well on the road to recovery once more, and for all those out there who think it'll never end, it can - you do get better, although it's possible that, like me, you'll find it's something which has to be managed lifelong.

My treatment this time round has been different from previous bouts - I'm now taking low dose naltrexone (LDN), which is safe, cheap, and a generic drug, which is why the UK/US drug companies are so reluctant to trial it on a large-scale basis...no money to be made! However, I'd thoroughly recommend that sufferers check it out, as I and a large number of other ME sufferers worldwide have been having excellent results with it - there's a conference on LDN going on in Glasgow on 24 April if anyone's interested in checking it out further (I'm not sure if I'm allowed to post a link to the site here, but if I am, I'll happily do it).

As well as LDN, I also pushed my GP and my neurologist to do a bit more investigation of blood results, and I've been found to have phosphate, magnesium, vit D and calcium deficiencies, as well as an underactive thryoid. All of this fits with the idea that ME is to do with disturbance in the HPA axis, and is in fact an overreaction of the immune system - the immune system switches on to fight a virus (or in response to an immunisation), and never properly switches off again. In fact, Luc Montagnier, the bloke who got the Nobel prize for isolating the HIV virus, is now working on immune system overreactions, and is apparently interested in ME - so it may be that in the next few years we get some kind of a breakthrough.

I think the other thing I want to say (sorry, this is a loooooong post!) is that IMHO CBT and the Lightning Process are, hmmmmmmmm, how do I put this, probably quite useful for some people in terms of 'postive attitude', but are also a very good way for psychologists (or those who would like to be psychologists) to make rather a lot of money.... you only have to look at the way in which the NICE guidelines in England and Wales were horrendously politicised by the psychological lobby, and the resultant dearth of biomedical research into the condition, to see how the 'psychological' stance on ME has damaged and blighted sufferers' lives. With this bout of ME, I was referred to my local specialist service, and when on the 2nd visit I asked the consultant if he could give me references to articles in the medical journals discussing the benefits of CBT for ME (my brother's a senior clinical psychologist, so there would have been no problem in accessing or understanding them, as I pointed out), there was about 5 minutes of bluster before he suggested I google some keywords... 'nuff said, I told my GP that it was a waste of my time & what little energy I had, and never went back!!!

Anyway, I won't take up any more of your time - to those out there suffering, adults or kids, it can and does get better, there are treatments out there, and hopefully there will be more research done in the near future which will not only begin to differentiate between the sub-types of ME, but also provide more evidence-based therapies for them.

Thank you for listening!

There is interesting work looking at the role of Vitamin D3 in fatigue from a variety of conditions and health issues.

You could ask her to get her vitamin d blood levels checked and based on newer research the levels should be over 75 (uk units, not USA units)
If less than 75, which in a recent survey over 50%uk adults would fall into this group - you can supplement with capsules. Holland and Barrett now stock 1000 international unit capsules (25micrograms) and you could take 1 to 2 a day safely then recheck blood in 3 months. Won't do any harm, may help fatigue and also has benefits such as reducing cancer risk. See vitamin D council on the web.