ME / CFS - My experience [rant]

Iamphoenix

Hey Dec- remember me? its Lois. Didnt hear from you in ages!!!
I read all these posts with interest- and just to update- I took strong anti biotics for 9 months,after seeing a Lyme doc in Wales- finished last Christmas and have been in the main off them for this past year. if I get an infection and the symptoms come back I have to go back on the tablets.
I know its not a cure, but my quality of life has really improved a lot. Still have to take frequent rests, and make sure I eat well, no alcohol(!) but have been one of the lucky ones. I was out with a traction kite this summer-can you believe it?
If anyone is looking into the Lyme aspect, there is a group on yahoo called http://health.groups.yahoo.com/group/Eurolyme -theres a lot of info on there for anyone interested. A lot of folk on there with the M.e. diagnosis are getting treatment for Lyme.
How are things with you at the moment Womoma? And hows your Mum?
Lois

condra

LOIS!!!

Welcome to boards.ie! Good to hear things are still going well for you. Generally, this year has been the worst for me since the first year, but at the moment Im not too bad. Since getting ill 6 years ago, November and December have always been tough months.
Mum is great thanks. She wrote a book, thinks shes the next Meave Binchey

Iamphoenix

DEC!!!!!!!:eek:
Well i dint hear from you in ages- really sorry to hear you are so s***e, I always seemed to be down with everything going this time of year- i think our immune systems are really poor and of course we cant fight infections at all well.
You'd be sick of it altogether especially when all your friends are out and doing, worl seems as though its moving on without us.

Well done for your mum, its great she wrote a book- was it fiction or non. I think it takes greatforce of will to finish a book, never mind starting it.
Dont think I could do it.
Will pm you later.
Lois

condra

Non -Fiction. About her stroke. Yeah sure Ill catch up with you in PM later.

Iamphoenix

Sorry to hear about that- didnt know she had been so ill..
L.

tbh

on topic from here folks

Corruptedmorals

I didn't know CFS could last that long! My sister has it, we were told it would eventually clear up by itself. She's 23, and started feeling sick in May. She was diagnosed first with an underactive thyroid, hypoglycaemia (sp?) and M.E in about August..it was brought on by glandular fever none of us knew she had. She has good days and bad days, when she's good she always ends up overdoing it, like you said, and bad days where she's too weak to move anywhere. Her sleeping patterns are disrupted again atm, doesn't sleep till 3 or 4 in the morning. She hopes to go back to work in April..please God.

Our GP is very good and while not 'quick' to diagnose ME..the test results were very clear..he's been supportive from the start.

Thank you for your post. It was quite upsetting for me to know how long it can last, so I can imagine how you yourself feel.

kangaroo

The ME-like syndrome that follows Glandular Fever/Epstein Barr virus tends to have a better prognosis and shorter recovery time - a large percentage recover with 2 years.

BluePaddy

This kind of sums it up......

http://www.youtube.com/watch?v=r0w9-eQ_fKQ

sorella

Thank you for ths thread.

I was misdiagnosed as being mentally ill/nerves almost 40 years ago now. And treated accordingly of course:)
It was in the UK.
In the days when valium etc were the cure alls
They call it Involuntary Tranquilliser Addiction.

And anti depressants etc etc etc.

It took a year in total reclusion to get myself off all meds; by then my trust in drs was extinct.

Blessed by the resources the internet provides of course.

The good thing was that thet decided I was too weak/bad a person ever to work again so I was on disability permanently. Never any problems there..

The real illness was and is M.E. Classic onset. Classic symptoms etc In all their terrible reality. Classic misdiagnosis and mistreatment.

When finally less than ten years ago I had my medical records set right, I left the UK. Never to return.

I find Ireland more accepting simply.

By the way, do you know the Irish M. E site?

And by then I had learned to live with and within M.E. And I had also stopped expecting anyone to understand or know what the suffering was and is.

So few do and I grew weary of banging my head against a brick wall

Now I am of pension age, and living a deeply fulfilling life always. Within the illness

And very self-sufficent.

I rarely see a doctor. The abuse I suffered in the UK over decades. Rarely use meds and I know what works for me in OTC terms.

As i know what foods help and which do not.

My environment is simple; no chemicals etc. It all becomes second nature.

If i need a day in bed, I take it. If I can walk a way down the lane, I do that. Always hands are busy with work for others now. So much need in this world.

And I enjoy life greatly.

Whatever we have as health problems, life is still precious and beautiful as so many here show so wonderfully.

kangaroo

sorella wrote: »

By the way, do you know the Irish M. E site?

I'm not sure if you're offering the info, or if you're asking - I'm going to presume the latter. Here are three links that may be of interest to you or other people reading this thread:

MEChat-Ireland
http://health.groups.yahoo.com/group/mechat-ireland/

Irish ME Trust
http://www.imet.ie

Irish ME/CFS Association (until recently known as the Irish ME/CFS Support Group)
http://www.dublin.ie/websites/irishmecfssupportgroup/
(Its web presence is not great but enquirers get a free information pack with the numbers for over 100 people with ME/CFS around the country - so can be a way of talking to people off-line)

Sorry to read your story. Late diagnosis can cause all sorts of problems with this condition, I think.

sorella

Thank you; I was too sleepy to look it up:)

I am fine; I came to terms with all that has happened years ago. what I have is what I have, simply. Yes, many are made worse by misdiagnosis indeed. When I accessed my medical files, the ??? many drs had pondered was that there were so many "real" physical symptoms they could not account for.

They are only people.

And that was of course before the days of the internet. Now we can find out so much more and choose what we take etc.

And we can thus protect ourselves more against the kind of abuse many with ME suffer.

I ended up in the UK with no medical care - period. At least here we can change drs without too much hassle.

And age gentles so much, does it not?

Emerald Lass

Hi all,
just found this thread, with the help of Kangaroo.

Before I got CFS I was a fairly active person, high energy levels, able to work F/T and still have energy for a social life, but CFS has changed that.

For years I have had bouts of fluey symptoms, and get swollen glands (in my neck, armpits, groin etc). It appears to all have stemmed from a glandular infection I got in Oz where I got swollen glands, and tiredness and then a week later caught chicken pox (I was 24 at the time). These episodes of swollen glands, sore throat and tiredness continued for years. but they didn't affect me too badly - I could still go to work. All it would take was a day in bed maybe to be back to normal.

At easter 2005 I moved into my new house, and two days later got a bad 'stomach flu'. I had chronic diahorrea, cramping, temp, sweats, generally feeling crap and fluey. The temp and sweating cleared up but the diahorrea and cramps remained, up to 8-10 times a day and blood in the stools. The fluey symptoms remained. because of the chronic diahorrea I couldn't go back to work so went to my GP. Had loads of tests (one involving having to bring my poo in a little box to the hospital! I had visions of being stopped by the guards for something and them finding a box of poo in my car! lol).

Basically, after weeks of being unwell like this no result came back (but then again they did do the wrong test on the sample! :rolleyes:) I went in for an endosopy - first one only on lower intestine, showed some inflammation, so I was called back for a second one for the whole intestine and to take a biopsy. Again some inflamation, but the biopsy was clear, so I was diagnosed with IBS. It took a year to get rid of the diahorrea totally which was worse in the mornings - luckily I had a sympathetic boss who allowed me to start work later.

I was prescribed anti-anxiety meds as my doc said that the new theory is that they can allieviate the symptoms of IBS. I was put on LExapro and they made me feel so spaced out for a few weeks, but that subsided and they did seem to improve the diahorrea, but not the tiredness. My GP said I possibly have post viral fatigue or CFS. He was sympathetic but said little is known about the condition so he wasn't really sure how to treat it other than for me to do what my body tells me - rest when I need to and not overdo it.

But since that bout of stomach flu the symptoms have only got worse - extreme fatigue, disrupted sleeping patterns, general aches and pains, increased circulation probs (lots of pins and needles in my feet and legs and arms). I have days were I literally can do NOTHING but sleep, and my joints feel so tired, its like I did a major work out at the gym! every muscle feels tight and sore. I still also occasionally get the diahorrea back and the swollen glands.

A few months after my IBS diagnosis I changed doctors, as I was living elsewhere by then. This doc is from Canada, and striaght away accepted that I most probably have CFS, but again not much is offered in the way of treatment. I have had several bouts of blood tests - one comes back regularly showing an elevated white cell count. I also have low B12 - which it has now been discovered is not as a result of poor diet, but genetic. both me and my sister have a B12 deficiency called pernicious anemia where out bodies cannot absorb B12 via food. We get regular b12 injections. My doc was convinced that once I started on the B12 my CFS would abate - I did feel a bit better; instead of needing 12 hours sleep I could manage on 10 and manage to cook a meal (before I was too tired to even cook) but many of the sysmptoms persisted. I was far from 'cured'.

I will admit that I had depression - I did have it prior to getting sick, as my mum had just died, but I was coping with it,and functioning well and still able to work, see friends, socialise. It was not affecting my physical health - I was just understandably sad and grieving, some days more than others. But when I got sick my depression got worse. not only did I miss my mum some days, but now I felt sad everyday, lethargic and hopeless - when I looked at my house, which I was too tired to clean and which was like a pig sty I got even more depressed. Feeling so tired and useless made me depressed and knowing that a lot of people think you are just lazy makes you depressed. TBH the lexapro did help with the IBS but not the depression - actually it is less like depression and more like desperation. Desperate to be better or at least have someone take you seriously.

Although both doctors I saw were sympathetic neither could offer any real treatment. I had to give up work in Ireland as I just could not manage it. I had a wonderful boss who was really sympathetic, who gave me flexitime and even allowed me to work from home sometimes - but it was not the level of work that made a difference, some days I just could not get out of bed, my body just could not do it.

I was lucky, my fiance runs his own business abroad and I was able to move to Turkey and work with him. I could work as and when I was able, and most of my work was done at home. I could sleep when I needed, and the weather and environment did help lift my spirits which in turn helped me feel less depressed. However, the bad news is that now I must return to Ireland - my dad is ill. The only way I can afford to live in Ireland is to work. I am so nervous about it. I have not had a bad crash in about 5 mths, but I think a lot of that has to do with where I live. I am so worried that although I feel better, I am not 'cured' and it has not worked its way out of my system the way the GP seemed to think it would. The only way to find out is for me to go back to work and see if I can cope.

The fear is that if the condition flares up again then I will be back in the same boat as before - no useful treatment in sight, little hope of getting diability, and a new boss who will hardly be sympathetic when I am only a new employee. When I was in Ireland before I asked my doc to support a claim for disability, and he said in his opiion my main illness was depression and that this is a very difficult condition to get disability assistance for as I can physically work. I pointed out that I cannot physically work cos my body gets so tired, and the only reason for my continuing depression was the fact that I feel like an old woman at 28! So like I say I have a sympathetic doc in th sense that he acknowledges I almost certainly have CFS, but who doesn't seem to appreciate just how debilitating that can be.

Even when depressed and feeling tired I tend to put my best face to the world - people generally don't know how I am really feeling. So then they think I must just be lazy cos I seem perfectly healthy - this seems to go for my doc too. If I go in and tell it like it really is then he seems to think it is more down to depression than CFS. If I go in armed with info I look like a hypocondriac who just wants to be sick. If I insist that I am not depressed (which is not true, but my depression is the result of CFS not the cause) then he doesn't believe me.

I moved away and to be honest the fact that I no longer had to justify my illness or 'do battle' with doctors - this alone improved my condition. I have just been listening to my body and resting when I need to. I still work, but again when I am able, and it is not a set 9-5 and I don't have set targets, but a more relaxed schedule. Since this change I have had only 3 or 4 crashes, and they have only lasted a day or two.

but now what? back to Ireland, back to F/T work which I may not be able for and back to arguing with doctors about my condition??????

thank god for meeting others on the net, otherwise I would start to believe that I am a hypocondriac and just lazy!

sorry for the long post, but as I am sure you all appreciate, many of us with ME/CFS just can't explain our situation in a few sentences!

condra

Hi Emerald Lass. Thanks for sharing your story. I hope things go well for you in Ireland. Let us know how you get on.

kangaroo

Emerald Lass,

Sorry to hear about your difficulties.

Your symptoms sound very much like CFS or ME symptoms to me.

If you can not work, you can not work.
However if nobody will say you have CFS, it can be more difficult but not necessarily impossible to get disability. Your current doctor does not have to say you have CFS - once one doctor diagnosed you. Even saying that's the working diagnosis can be enough. Disability assessments aren't necessarily illness-specific.

The State disability assessment system in Ireland is somewhat informal. It is hard to win against the insurance companies but less hard for disability allowance/benefit. Lots of people get turned down at the first stage. But generally people with ME/CFS who aren't able to work do seem to get disability at the second appeal or when they get to the final stage. Some people have ongoing battles e.g. they get re-assessed regularly and occasionally are taken off; others are only re-assessed every few years and once on it have few problems.

It is unfortunate but if you do try to work but can't that can actually work in your favour for disability. It shows you can't work rather than you won't work.

If you do get to the stage of applying for disability some people here may have gone through the process and be able to give you advice. Alternatively you could contact ME groups in Ireland.

If you can't work, you can't work. Plenty of people with ME can't work. Some have been made worse in the process of trying to force themselves to work and have never recovered. This can ruin lives. ME shouldn't be taken lightly.

At the same time, some people with ME can work in certain jobs. So if they find suitable jobs, some people with ME/CFS can work. But at the same time if somebody can't find a suitable job, they can't work. Also the unemployment payment is the same rate as disability payments (except invalidity) so you can still use that as a back-up if you can't do anything particular jobs and are looking for jobs that you might be able to do within your level of disability.

Best of luck

Emerald Lass

thanks for the advice kangaroo. My worry is that while I am waiting on them to tell me if I can get disabilty, what do I do for money? I have heard a story from a friends mother that just totally disheartened me - she is applying for disability due to severe rheumatoid arthritis. She can no longer work in the job she had, as it requires typing and she can't use her hands. She is 52 and not trained for much else and has been in this job for 13 years. At 52 and with a disability it is unlikely she will get a different job which she can manage.

So she left work and applied for diability. Whilst waiting on the disability assessment, she went on the dole. 6 weeks into her dole benefit, she was asked by the local SW officer why she wasn't working - she stupidly said its because she's not well and can't and is waiting on disability benefit. Once the SW officer heard this she immediately cut off her dole and requested the money she had already been paid was returned - as she was not fit to work and not actively seeking work she was not entitled to dole. She didn't realise this as when she told her situation to the citizens info they told her to leave work, apply for dole so that she gets money and then apply for diability. So the poor woman was left 4 mths waiting to hear about her disability benefit, and 4 mths without any money. Luckily she is married with a husband who earns so at least there was some money coming in.

So what is the procedure for applying for diability? do you call in sick to work, then go on those yellow slips and then apply for long-term? what if you don't have a job to begin with?

My main worry about disability is that €200 or so a week won't cover my mortgage - do you get some sort of assistance for that in addition to the benefit or would I have to sell up?

Finally, as my fiance needs a visa to come to Ireland, they will not grant that if I am not working and am on any type of social benefit (I know I know, plenty of non-nationals apply for their spouse to come over and they are on benefit, but it seems its one rule for one, a different for others). So I need to work at least until we are married and he has his residency visa (which he should get once we are married in May). So like it or not, it seems that I will be working regardless for at least 6 mths (provided I can get a job! won't be mentioning anything about my CFS - as far as my doc is concerned I haven't had a serious relapse in 5 mths, so I might be over the worst of it. Am getting a letter from him to that effect, and then if I do get ill again and an employer makes an issue of it I can say I was fit for work when I took the job).

kangaroo

Emerald Lass,

I am sorry to hear of the difficult situation you are in.
It would take a long time to work it out and I'm not sure I have the time or energy at the moment.

My main expertise is in ME/CFS; my knowledge of the general social welfare system has been learned on an ad hoc basis. At the same time over the years, I've learned that different people can be treated in different ways - one person can be treated more harshly or leniently than another. There is often flexibility. People with in-depth knowledge can often point to precedents or work around things in the system. So for example the person with RA might have been unlucky but not everyone might be treated like that.

There is a national number for the Citizens Information (1890 777 121, 9am-9pm). Although, given all the complications in your situation, a scheduled one-to-one in a local CIC office may be better.

Anyway I will throw a few things out.
There is something can Supplementary Welfare Allowance - this is for people who are falling through the cracks. You can search for it and find out more about it. It seems to be somewhat discretionary.

One thing that occurs - could you be a carer for your father? Carers get a certain payment and can also be eligible for other benefits. I think there is some scope for combining e.g. doing a little work and also getting it.

I know somebody who gets disability (not somebody with ME) and also carers (not full carers - around 100 Euro on top) but I'm not sure how common that is (she lives with her elderly mother).

With mortgages, if one is getting social welfare payments, they can in some circumstances pay for your interest (or pay towards it) - you have to switch to interest only payments.

There is no doubt that for most people with ME or other people, who have previously worked, living on disability or unemployment is tough and some sacrifices have to be made. However with ME/CFS, people have as I said done long-term harm to their health by continuing to work. So difficult decisions sometimes have to be made.

There are two basic types of disability payment: disability benefit/sickness benefit - this is where one gets notes from your GP. One needs to have credits from working to get this. After a period one can be brought in to be assessed. If one is on this for a few years one can apply for Invalidity Pension which is a tiny bit higher (e.g. 7 Euro?) but allows one access some other benefits such as free travel pass.

The other one is disability allowance. This is for people who don't have stamps. It is means assessed, based on somebody and their partners' income (I don't know how it would work if unmarried partners are in separate countries; I don't think generally one would be assessed if one suddenly started going out with a rich man/woman as long as one doesn't live with them, so you would probably be fine once he is referred to only as your boyfriend). Savings over 50,000 are assessed (but not non-liquid assets like a property), I think at an interest of either 5% or 10% i.e. they presume that is the return you are getting and subtract that from the basic payment. A problem with disability allowance is that one has to prove that one isn't going to be able to work for one year.

So perhaps unemployment may be the best option for you or carers.
I really can't comment too much.

I just feel I need to point out that pushing with ME/CFS doesn't just cause short-term problems; it can cause long-term problems. ME/CFS is a potentially very severe condition - not everyone who is severely or very severely affected were always that bad; trying to keep going or trying to exercise may have caused them to get worse.
And that many people with ME/CFS are getting disability payments.

Best of luck

Emerald Lass

kangaroo - thank you so much for taking the time to reply. As you said, even thinking about the SW situation in Ireland wears you out! Sometimes I think going to work would be less stress on your system than going throught he SW system!

Psychologically I would love to get back to work - I work for myself at the moment and work from home a lot. It suits me great, as I don't feel retired or on the scrap heap at only 30. Personally, the thoughts of going on disability at my age is just the pits, and whilst physically it might be for the best, emotionally it would affect me seriously negatively. also while I have NO problem changing my lifestyle to meet my situation, cutting back etc., getting €200 per week with a mortgage at interest only rates of €800 per month still isn't much use, as I believe that most people benefit from eating food on occasion and having heat and electricity! lol

Carers is not an option as my sister is already getting that for my dad (after a LONG hard battle).

The irony is that getting SW of any kind can be a draining experience, and when you are sick you just don't have the fight in you to battle.

Whilst pushing myself to work is not ideal, it may actually be my only option for a while at least. Or until I get enough information to make an informed decision.

thank you again for taking the time to reply - it has certainly given me a lot of food for thought.

kangaroo

Thanks, Emerald Lass.
If you're working for yourself, perhaps it won't necessarily make you worse.
The problem for many people with ME/CFS is getting themselves to a place of employment and then having to do work - they may be able to get there or work from home but not necessarily both.

It also depends on the severity of the illness. I've come across plenty of people who know they'd feel better psychologically if they could work; or their family might be in a difficult situation; but they simply can't. ME can be anywhere on a scale from 0 to 100 where 0 is being totally bedbound and needing somebody to spoonfed you as you don't have the energy to lift your arms to do it yourself.

Emerald Lass wrote: »

while I have NO problem changing my lifestyle to meet my situation, cutting back etc., getting €200 per week with a mortgage at interest only rates of €800 per month still isn't much use, as I believe that most people benefit from eating food on occasion and having heat and electricity! lol

Just to be clear in case I wasn't. As I understand it, they pay for all or virtually all of the interest on top of the €200. I don't know the details e.g. you may be expected to lengthen the mortgage if you are "only" on a 20-year mortgage. Heat/electricity can sometimes be paid for by the local health centre.

Best of luck.

kangaroo

People with ME/CFS should do a search for "chronic fatigue syndrome" OR cfs xmrv and read about the very interesting research that was published just over a month ago on the issue.

condra

Indeed. It looks like we could have testing, and even treatment available within a couple of years. Fingers crossed.

condra

The prospect of a potential diagnostic test is very exciting to me.

I find the thoughts of someone being overwhelmed with joy at being diagnosed with a retrovirus rather funny and ironic, but an indication of how dismal it is to live with undiagnosed and grossly misunderstood illness.

condra

I emailed Professor Simon Wessely of Kings College, London to ask for his response to the findings in America.

Simon Wessely, if you don't already know, is a rather controversial figure in the CFS/ME community because of his view of the condition as a psychriatric illness, and his self proclaimed expertise on ME/CFS.

It would be fair to say he is widely despised within the ME/CFS community.

Despite the apparent vindication of ME/CFS patients who have always favoured the theory of an organic causation rather than a psychriatric one, his response is still somewhat defiant.

Professor Simon Wessely wrote:

Fascinating stuff

Could be a real breakthrough, even if i still don;t understand how they made the leap from prostate cancer to CFS

But there have to be questions though....i am worried that 20% of the CFS patients seem to have lymphoma (ie cancer), which might be fascinating for our knowledge of cancer, but really isn;t relevant for CFS

I am also nervous that the rates/differences are just too high - everyone whatever they think about CFS agrees its a broad church, defined purely symptomatically - see the various case definitions, and thus must consist of different sub groups - that a single agent could explain three quarters of cases just seems a bit unlikely

The great thing about science though is that it is self regulating

By this time next year we will know - either other people will have replicated the findings, or they won't

But i would be very surprised indeed if others find rates of XMRV at the same level as this paper - personally i would be more convinced by replications that confirm the association but at lower levels of significance - i

til then people need to be patient, and i hope not use precious resources on untested treatments such as anti retroviral agents...it is far far too soon for that...


Simon Wessely

kangaroo

condra wrote: »

It would be fair to say he is widely despised within the ME/CFS community.

Yes, and I think with good reason!

Professor Simon Wessely wrote:
But there have to be questions though....i am worried that 20% of the CFS patients seem to have lymphoma (ie cancer), which might be fascinating for our knowledge of cancer, but really isn;t relevant for CFS.

Actually, the people didn't have lymphoma at the time. Years later they developed it.

I'm afraid I have little confidence that some are that interested in making such a connection. CFS for them is a dustbin diagnosis of a type and if you show anything physical, you then to be taken out. So co-morbidities or subsequent diagnoses are often not recorded.

kangaroo

condra wrote: »

Professor Simon Wessely wrote:
til then people need to be patient, and i hope not use precious resources on untested treatments such as anti retroviral agents...it is far far too soon for that...

Simon Wessely

As opposed to CBT for CFS which he has hyped over the years, which has never really been properly tested i.e. with objective outcome measures - the RCTs that supposedly claim it leads to increased activity have never used pedometers/actometers. Some small studies suggest people actually do less activity in total i.e. they do more walking as part of their walk but then do quite a bit less for the rest of the day so end up doing a little less overall.

CailinGaillimh

Resurrecting an old thread, but it helps to know that there are so many other people in the same boat as me.
Hit down with a viral infection when I was 14, between things M.E. and a few other health issues came up. Suffered very badly until I was 20. Have my off days now, but nowhere near as bad as when I was ill.
Has anyone heard of any genetic links? My second cousin was diagnosed with M.E. a few months before I became ill & it was through that development that doctors began to look at the possibility of m.e. However I've never been told for certain whether there was a genetic link, or was it sheer coincidence.
Anyways; after a long road of almost 9 years - I've been bad spell free for 2 years & am studying a full time masters! It takes its toll, and I make sure I'm not putting myself under too much pressure - we're getting there though!

kangaroo

CailinGaillimh wrote: »

Resurrecting an old thread, but it helps to know that there are so many other people in the same boat as me.
Hit down with a viral infection when I was 14, between things M.E. and a few other health issues came up. Suffered very badly until I was 20. Have my off days now, but nowhere near as bad as when I was ill.
Has anyone heard of any genetic links? My second cousin was diagnosed with M.E. a few months before I became ill & it was through that development that doctors began to look at the possibility of m.e. However I've never been told for certain whether there was a genetic link, or was it sheer coincidence.
Anyways; after a long road of almost 9 years - I've been bad spell free for 2 years & am studying a full time masters! It takes its toll, and I make sure I'm not putting myself under too much pressure - we're getting there though!

Here's a study that found some evidence for a genetic element:

Evidence for a heritable predisposition to Chronic Fatigue Syndrome.

Free full text: http://www.biomedcentral.com/1471-2377/11/62

BMC Neurol. 2011 May 27;11:62. doi: 10.1186/1471-2377-11-62.

Albright F1, Light K, Light A, Bateman L, Cannon-Albright LA.
Author information

Abstract

BACKGROUND:

Chronic Fatigue Syndrome (CFS) came to attention in the 1980s, but initial investigations did not find organic causes. Now decades later, the etiology of CFS has yet to be understood, and the role of genetic predisposition in CFS remains controversial. Recent reports of CFS association with the retrovirus xenotropic murine leukemic virus-related virus (XMRV) or other murine leukemia related retroviruses (MLV) might also suggest underlying genetic implications within the host immune system.

METHODS:
We present analyses of familial clustering of CFS in a computerized genealogical resource linking multiple generations of genealogy data with medical diagnosis data of a large Utah health care system. We compare pair-wise relatedness among cases to expected relatedness in the Utah population, and we estimate risk for CFS for first, second, and third degree relatives of CFS cases.

RESULTS:
We observed significant excess relatedness of CFS cases compared to that expected in this population. Significant excess relatedness was observed for both close (p <0.001) and distant relationships (p = 0.010). We also observed significant excess CFS relative risk among first (2.70, 95% CI: 1.56-4.66), second (2.34, 95% CI: 1.31-4.19), and third degree relatives (1.93, 95% CI: 1.21-3.07).

CONCLUSIONS:
These analyses provide strong support for a heritable contribution to predisposition to Chronic Fatigue Syndrome. A population of high-risk CFS pedigrees has been identified, the study of which may provide additional understanding.

PMID: 21619629 [PubMed - indexed for MEDLINE] PMCID: PMC3128000

I'm slightly concerned about the validity: not all cases of CFS are diagnosed (two random-digit population studies in the US found only 9% and 16% were diagnosed). One is probably more likely go get diagnosed if one has a relative with it.

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Twins study from Sweden. They looked at CFS-like. This means they appeared to satisfy the Fukuda et al. criteria for CFS (1994) but weren't individually clinically evaluated.

Twin analyses of chronic fatigue in a Swedish national sample.

Psychol Med. 2005 Sep;35(9):1327-36.

Sullivan PF1, Evengård B, Jacks A, Pedersen NL.

Author information

Abstract

BACKGROUND:

Chronic fatigue has infrequently been studied in twins. Data from twin studies can inform clinical and research approaches to the management and etiology of human complex traits.

METHOD:
The authors obtained telephone interview data on current chronic fatigue from 31406 individuals twins in the Swedish Twin Registry (aged 42-64 years, 75.68% response rate), from both members of 12407 pairs and from one member of 6592 pairs. Of the complete pairs, 3269 pairs were monozygotic, 9010 pairs dizygotic, and 128 pairs of unknown zygosity. Structural equation twin modeling was used to estimate the latent genetic architecture of varying definitions of fatiguing illness.

RESULTS:
Estimates of additive genetic effects, shared environmental effects, and individual-specific environmental effects were similar in males and females. No definition of current fatiguing illness (ranging from any fatigue to CFS-like illness) was strikingly distinctive. Individual-specific effects were the predominant source of variation, followed by modest genetic influences. We could not exclude a small but conceptually important contribution of shared environmental effects.

CONCLUSIONS:
Current fatiguing illness appears to be a complex trait resulting from both environmental and genetic sources of variation without pronounced differences by gender.
PMID: 16168155 [PubMed - indexed for MEDLINE]

CailinGaillimh

kangaroo wrote: »

Here's a study that found some evidence for a genetic element:


I'm slightly concerned about the validity: not all cases of CFS are diagnosed (two random-digit population studies in the US found only 9% and 16% were diagnosed). One is probably more likely go get diagnosed if one has a relative with it.

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Twins study from Sweden. They looked at CFS-like. This means they appeared to satisfy the Fukuda et al. criteria for CFS (1994) but weren't individually clinically evaluated.

That's very interesting. I was reading everyone's stories here about diagnosis. I too was misdiagnosed, "all in my head"; referred to psych over it. I collapsed 2 weeks later - was also suffering chronic stomach pains, which turned out to be adhesions wrapped around my vital organs - to be turned away on the basis that it was "all in my head". An old school doctor. Thankfully met some very decent trainee doctors who knew there was something there & who went under another lead consultant to get me sorted.
My misdiagnosis almost killed me. And I'll challenge anyone who says that CFS/M.E. is all in our heads..!

The_Conductor

CailinGaillimh wrote: »

I'll challenge anyone who says that CFS/M.E. is all in our heads..!

Unfortunately to this day there is a cohort of doctors out there who think every single person walking in their door is a hypochondriac. The amount of misdiagnosis (and I'm not talking strictly about ME) is staggering- its across the board- any illness that doesn't have an obvious visual symptom- and the GP mentally ascribes some manner of psychiatric diagnosis to the person- without any further investigation. Even obvious things like diabetes, crohns, heart failure etc- end up with a referral to psychiatrists- there is a small but dangerous cohort of old school doctors out there who are definitely responsible for a large number of deaths.

kig

I'm joining this discussion a few years late, but hopefully some of you are still available to help.

I have had ME for about 13 yrs now, and am at a stage where I have accepted that I have it and probably won't get any better. I am 99% house bound and probably spend about half the day horizontal, and most of the rest on the couch.

I've been to see a few doctors in the past, have tried all the things, GET, CBT, and loads of different meds, which I have whittled down to a few things which actually help. Unfortunately my GP (who I managed to educate about my condition after a few frustrating years) has retired. His replacement seems to have set me back to square one, wanting me to exercise (which I have told him I cannot do without major crashes), and now wants me to redo a whole lot of blood tests again. I get the feeling that he doesn't believe that I have ME, or maybe the ME is just in my head. I don't really want to go through all that again!

Can anyone PM me with a GP in SW Dublin area who is more sympathetic to ME patients.