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ME Awareness Day

(35 Posts)
gingerbiscuitandacuppatea Tue 12-May-15 13:19:32

Today is ME Awareness Day. There is a brilliantly written guest post about M.E. www.mumsnet.com/Talk/guest_posts/2376412-Guest-post-M-E-Awareness-Week-No-Im-not-just-tired

I have had ME 23 years and I am frustrated by how little understanding there still is in this Neurological disease. Newspapers still often support the view that ME patients just need to try harder while it has been proven time and time again that this is a real, biological disease with many similarities to the widely known and understood MS.

gingerbiscuitandacuppatea Tue 12-May-15 14:58:13

bump

Anydrinkwilldo Tue 12-May-15 15:55:53

<waves at ginger> not an ME sufferer myself but work colleague is and the lack of understanding in our workplace is crazy. And we work in a medical setting. My friend has recently taken part in the chilliME challenge, have you seen this yet

CFSKate Tue 12-May-15 19:00:42

ME medical conference in a couple of weeks time.

Volunteers needed for research

www.ukrituximabtrial.org/

Norwegian trials of the drug Rituximab so far seem to successfully treat two thirds of patients.

CFSKate Tue 12-May-15 21:03:36

bump

CrapBag Tue 12-May-15 21:51:47

I have it and have been posting many different things on my FB page to just try and make people more aware. I've probably been hidden by loads of people as I'm always posting things on there. My friends and family know I have it but most don't get it or even try to. One mum at school frequently makes a little dig about how I have more time because I don't work. Like I wanted to have to give up work at the age of 22 and not be able to go back 11 years later. Not my idea of a fulfilling life at all.

One friend tries to identify and does ask questions so I forgive her for this but she will say that she has some idea of how I feel because she was so tired when she was pregnant. I did point out once that at least she knew it was going away when she had the baby.

I feel that Martine Bloody McCutcheon hurts our cause more tbh. She pops up to give her support, about how she got bloody better by working through it and not giving in and getting on with it. If it actually worked like that I wouldn't have had to give up work. Tried ignoring and working through it and carrying on but ultimately it isn't going to work and made me worse and worse.

My grandad did say once about exercise making me better and I said I couldn't so he said "oh so you're different from everyone else then" and when I said yes I think it actually made him think and my nan said he has read up on it. He did used to say I was ok 80-90% of the time and I said no, it's just that he only sees me when I am well enough to be out and visiting, he doesn't see me at home flaked out on the sofa. Thankfully I think he does get it more now and has often told me about some research he has read about or when they thought they had identified something about the cause so I know he is keeping up to date.

It's such a slow hard slog though, I know of 3 people in my life who try and get it and sympathise. The rest just see me looking well and just dont get it or even try to. I was explaining to my friend recently about when I had to hire a wheelchair on holiday and I did get up out of it and people were staring. She said they probably did as people would when someone gets up and stroll off from a wheelchair. I did point out I was in it because I could barely walk and was stumbling and hobbling down the stairs (only 1 lift suitable for 1 wheelchair/pram and a very large queue of parents so I just couldn't be bothered to wait).

gingerbiscuitandacuppatea Tue 12-May-15 22:12:02

Sorry I've not been around. I've been doing a lot of posts on facebook following my day and how ME affects me. Its been exhausting. I've been amazed by the support from healthy friends though.

The Rituximab research is very interesting, I'm very interested in the research in Columbia University too. They did the recent immune research and are doing many more. The main researcher Mady Hornig did an interview yesterday that you can watch on you tube about her hopes for a blood test and her other research. www.youtube.com/watch?v=AjrViKJGSUA

Plus we have the US's National institute of Health report on ME to come out in June. Hopefully they will be giving large amounts of funding to research.

twentyten Tue 12-May-15 22:23:53

Hi folks. I have a very dear friend who has suffered for over 20 years with bouts of me, lasting for years at a time. She has seen many consultants and specialists with no success. She read about ester rantzens. Daughters treatment and change to a celiac diet with dramatic effect. She is trying this with support from her gp with Significant improvement.

gingerbiscuitandacuppatea Wed 13-May-15 06:23:49

People with ME often develop allergies or intolerance, so a change of diet can help. But there is an underlying medical condition, with abnormalities in immune system, muscles cells and brain scans.(to name but a few)

I really don't see how they can be cured by a diet unless the original problem was not ME.

DuchessofMalfi Wed 13-May-15 06:44:42

Just found and read this thread. ME or CFS as my GP called it is something she's thinking I might have but I have to have lots more tests to eliminate everything else my symptoms could indicate first. Some days I am barely functioning, flaked out on the sofa. I have two young children and have to try to keep going for them but it's becoming increasingly difficult. The bouts of exhaustion come on suddenly and I am wiped out for pretty much the rest of the day sad sad sad

gingerbiscuitandacuppatea Wed 13-May-15 06:46:39

I just read the daily mail article on her, it doesn't sound like she had ME at all really since she improved with graded exercise and lightning therapy, then a final breakthrough with the gluten free diet.

Newspaper articles like these confuse the issue of ME further and are not helpful. If Esther had said, maybe my daughter never had ME, but coeliac that would be different. But she claims that coeliac caused her daughters ME, and that is no more likely than Coeliac causing MS or Aids.

gingerbiscuitandacuppatea Wed 13-May-15 06:59:45

Anydrink - yes I've heard of the chilli challenge and my husband and and soon are going to do it I think. Just need to buy some chilli's.

Crapbag- I'm sorry you have so little support. It seems to be really hard for people to understand, and as you say not at all helped by poor newspaper articles. My Facebook posts yesterday following my day seem to show how little my friends understood. They were surprised how I'll I am.

Duchess - has your gp spoken to you about pacing? It is how people with ME survive, you work out how much you can do in a day without over doing it, stick to that limit and have regular rests. Hard to do with kids though.

MissMuffetisin Wed 13-May-15 07:12:13

There is no doubt this can be a seriously debilitating condition, which is poorly understood , but it does not have many similarities to MS .

DuchessofMalfi Wed 13-May-15 07:37:57

ginger - she's given me a big printout of the symptoms and causes etc. I am pacing myself, resting when I can and often when I have to. Crashed out and in bed often same time as the children.

I have a lot more tests to undergo first in case this isn't it. She wants me to test for coeliac first.

gingerbiscuitandacuppatea Wed 13-May-15 09:53:30

MisMuffet - This research paper www.biomedcentral.com/1741-7015/11/205 published in 2013 says otherwise.
"MS and ME/CFS show remarkable levels of similarity in many dimensions."

I have numbness in my legs, arms, face, back, intimate regions.. the list goes on. I also get pins and needles and buzzing. I have had a MRI to rule out MS and now been told its just ME and there is nothing they can do. They numbness started with one toe when i was 19, the last year the rate of numbness spread has accelerated to a startling degree. I have heard of people who are diagnosed with ME or MS and then re-diagnosed as having the other condition. They are not the same, but there are many parallels.

Duchess, I'm glad you gp seems clued up on it and I really hope that something more treatable is found.

gingerbiscuitandacuppatea Wed 13-May-15 09:56:20

MissMuffet - another website listing similarities in a table www.hfme.org/mevsms.htm

murmuration Wed 13-May-15 10:28:54

I am very wary about telling people I have ME after too many times getting the reply, "I don't believe in ME". Um, not quite sure what I'm supposed to do with that? Reply, "I don't either, in fact, woohoo! I'm fine now!"?? And yet I hate never going to anything and having everyone assume I'm either antisocial or lazy or whatnot. sad

gingerbiscuitandacuppatea Wed 13-May-15 10:35:47

yes it is a hard illness to have. I have had friends tell me I just need to go to the gym, and similar. But the more we spread awareness the more people will understand, the less we will be ignored and the less the severe will suffer

hopefully.

Keepinonkeepingon Wed 13-May-15 12:39:12

The Charity Invest in ME are taking a fresh approach to creating awareness Art has the power to inspire, to evoke reflection, to see things differently, to force change.

An image can capture a thousand words and express views and feelings and convey a sentiment often far better than several pages of words.

Wolfgang Stiller is an award-winning German artist who currently lives and works in Berlin.

Wolfgang has kindly given permission for his matchstick images to be used for raising awareness of ME. www.investinme.org/matchsticks.htm

mummyto2monkeys Wed 13-May-15 16:28:40

I have extremely severe M.E, my neurologist was 99% sure that I had M.S due to the severity of symptoms. I cannot walk at all and have been wheelchair bound for over three years. I need a reclining wheelchair due to my not having the trunk control to sit upright on my own. I look as severe as someone with M.S. In fact I am a lot more ill than many of my friends who have been diagnosed with M.S. I also have bladder issues, muscle spasms, numbness and tingling. I have reduced feeling and completely failed the neurological exam recently. I think that it is easy when you know people with less severe M.E to forget that there are those like me and gingerbiscuitsandacupatea. I use a hoist to get in and out of bed, I am in a hospital bed at home and spend the majority of my day sleeping. I have carers coming in to wash and dress me and even to brush my teeth.

M.E has completely robbed me of a normal life, first appearing at the age of twenty and robbing me of a career in teaching. It has steadily progressed over the last thirteen years just as M.S does. If I have to go out for an appointment in my wheelchair then I am very ill for weeks after. The only quality time I get to spend with my children is when they come into bed with me so I can read to them and talk to them. Often I stay at home with carers whilst my husband takes my children out.

My neurologists are always apologetic and say they wish they could do more, that I very clearly have a very severe neurological condition. I have seen so many specialists that it is crazy... The neuropsychologist who I asked to be referred to for CBT sent me away saying that I very clearly had a severe neurological condition that could not be aided by CBT or psychological treatment as I have no issues psychologically. Rheumatology wasn't much help either. My heart plays up a lot too, with tachycardia when I do too much.....

M.E is a terrifying condition that varies far too widely from the mildly affected to the severely affected like myself. There was talk of separating the two conditions CFS and M.E. With the milder affected being placed in the CFS group and those severely affected like myself in the M.E group. Perhaps this would help with the stigma or lack of empathy. The problem with M.E is that for most it is an invisible disease. For myself it is not invisible, in fact it is very obvious how ill I am and most people just assume that I have severe M.S. Awareness is badly needed, this condition is a robber of so much, robber of lives, robber of careers, robber of marriages and robber of childhoods in more than one way. Due to the children severely affected by this horrid condition too.

Letitsnow9 Wed 13-May-15 17:54:01

Missmuffit- why do you think it doesn't have similarities to MS? 2 people in my family have MS and ME, both have had many similar problems including needing catheters as the nerve signals weren't getting the the bladder, inability to walk, paralysis, bedbound, speech problems and so on.

I beg everyone to watch Voices from the Shadows, it's free to watch online

gingerbiscuitandacuppatea Thu 14-May-15 06:28:04

It frightens me how misunderstood this condition still is. After over 20 years of having ME you would think there would be much better understanding of the causes even if no treatments were developed. No body even knows for sure how many are diagnosed with this condition, the number 250,000 was quoted when I was cosy diagnosed and many more people develop it each year while only a handful improve enough to consider themselves recovered (and even these people are prone to relapses).

It would be easy for gp data to be gathered to how many.

gingerbiscuitandacuppatea Thu 14-May-15 06:29:07

Sorry, many typos

gingerbiscuitandacuppatea Thu 14-May-15 10:24:36

There was a blog bomb on Tuesday, ME Awareness day. #May12BlogBomb ME Blog Bomb

TheSecretCervix Thu 14-May-15 10:51:11

mummyto2 sorry to hear life is so hard. Have you ever been tested for POTS (postural Orthostatic tachycardia)? This causes the heart to race on standing, as well as the ME, this can also can add greatly to fatigue.

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