Is M.E taken seriously these days?

[MedusaIsHavingaBadHairday]

My DD2 is 19 and while still waiting for the results for some tests (Lupus, arthritis etc) the doc has says he thinks she has M.E. She has been suffering ever since she had severe Glandular fever two years ago.

She suffers from extreme exhaustion , migraines (on Amitryptiline and Sumatriptan for those) and horrible joint pains. She is extremely hypermobile anyway ..used to have a lot of dislocations as a small child.. which probably doesn;t help, but she is actually struggling to walk most days. He neck glands are often massively swollen too.

She is at university on a demanding course (nursing) and as you can imagine is struggling massively with pain and fatigue.

The docs haven't been very helpful so far..very dismissive because she is young, but she is very different from the full of energy girl she was pre GF and she is very concientious about Uni and struggles in to every shift and lecture, but is flat out in between. I'm honestly not sure how much longer she will manage if she doesn't get some support.

IS there any help out there? Meds? Vitamins? I really want her home to look after her:(

I don't know about ME (though my sister was diagnosed with it, and had to take extra care of herself for a few years - and my DH's niece apparently has it too).

But it sounds like a horrible time for your dd, and I'm sorry. Whatever the cause, it sounds as though the GF has triggered something - and I hope she gets the help she needs.

I believe there is an ME association? Could they give you information, maybe? I would think anything that supports her immune system would be good, but other than that am clueless.

Bumping for you nonetheless x

I had ME at Uni, also following GF.

I found that the university had a support group which was very helpful.

The best thing my mum did was to visit with a bag of healthy shopping, weetabix, vitamins etc. to encourage healthy eating to build up my immune system.

She also needs to learn her limitations in terms of doing what she can but not exhausting herself by doing what she used to.

There are also links (I think) between depression and ME, so try to help her to take care of herself and ask for help if needed.

You mentioned hypermobility - look at www.potsuk.org POTS - a lot of people with POTS have been misdiagnosed with ME and the problem with that is that there are things you can do for POTS - lifestyle changes, diet, medications. It can be triggered by/follow a viral infection, and the good news with that is generally you get over it.

Take her pulse when lying down, then again just after standing up and a few minutes later - if the heart rate goes up on standing by more than 30bpm, then it may very well be POTS.

if you think it is that, then there are quite a few POTSey people on here, plus parents of POTSey people, we can give lots of advice, and more importantly point you in the direction of a doctor who knows what they are talking about (sadly there aren't many in the UK ).

AFAIK an ME diagnosis can often be a "we don't know what's wrong but we'll call it ME as there's not really anything we can do for either that or whatever it is you have", so if you can avoid that, all to the good.

She doesn't faint does she, or feel dizzy?

you'd think by now I'd manage links

POTS info

In my experience yes it is - but it isn't particularly easy to find if you don't know where to look. I was lucky - my GP was brilliant as he took my symptoms seriously and eventually located the nearest specialist service. I had to wait awhile before I was seen, but once I was in the system there was a fair bit of help available
Have a look at this link to the ME Society web-site - there may be somewhere local to you or your daughter's university that she could be referred to.
www.meassociation.org.uk/nhs-specialist-services-throughout-the-uk/

you mentioned hypermobility. There was some mention of EDS Ehler Danlos Syndrome at the last ME conference - it says "It’s well known, said Bansal, that certain predisposing factors are associated with CFS, and people with these kinds of immune and autoimmune conditions (such as EDS) have a very high incidence of CFS, and even if they don’t have CFS, they too have chronic fatigue."

useful links to start with

International Consensus Primer for ME worth printing out

Invest in ME facebook, full of well informed people who are up to date on current research

uk website about the arthritis drug

Thankyou for those links Millymae and CFSKate.. having a look now!
The EDS is interesting.. she saw professor Pope as a small child and is thought to have EDS 3 but we never pursued a full diagnosis because she was there as a bendy sibling of her more disabled brother!

Just hoping we can find something that helps her a bit :/

My brother in law has ME for about 5 years now. He was bitten by a tick while on a walk and got Lime Disease while in hospital he caught Glandular fever which wiped out his immune system but GF seems to come up in conversations with others with ME. His doctor is very good and helpful so is the company he works for which has provided a room for him so he can lay in the dark when needed. Some days he cannot move his limbs and has no energy at all. Plus he has a son with Autism which takes all his time and energy when not working.