ME Support Groups in Ireland

by8auj6csd3ioq · 26-01-2009 3:55pm #1

Looking for info on ME/CFS organisations in Ireland.Is anyone a member and what is the cost? Are they any good? For someone newly diagnosed, is there anything to be gained by joining?

sorella · 26-01-2009 6:03pm

So sorry that this has hit you....

http://www.imet.ie/

A lot of information, and if you need to talk one on one they will call you for that.

They were very helpful indeed at one time.

The management section is sound; Dr Anne McIntyre has the illness and her book is excellent.

I would not agree re the anti-depressants, but that is my take on an illness of four decades.

Blessings and prayers

by8auj6csd3ioq · 26-01-2009 7:32pm

sorella wrote: »

So sorry that this has hit you....

It is not me thank God

http://www.imet.ie/

I would not agree re the anti-depressants, but that is my take on an illness of four decades.

You have it 40 years?

Blessings and prayers

Returned

kangaroo · 27-01-2009 1:06am

There are two national ME/CFS organisations in the Rep. of Ireland, the Irish ME Trust and the Irish ME/CFS Association. [The Irish ME/CFS Association was previously called the Irish ME/CFS Support Group for many years; before that the Irish ME Support Group and before that the Irish ME Association so it's come full circle!]

It is the one I am involved with. I would be the first to admit that its website http://www.dublin.ie/websites/irishmecfsassociation/ does not compare with the Irish ME Trust website. The Irish ME/CFS Association is an all-volunteer group and we have had to prioritise and with all the other English websites out there, we have decided at this time not to concentrate on the website side (choosing to link to some informative sites instead).

All enquirers get a free information pack. Amongst other things, it contains the first names and numbers of over 100 patients around the country who are available to talk to others. If people join, they will get the telephone network list where there are dozens of extra people. People can give all sorts of information about themselves for this so people have an idea who they might like to contact. This also includes the rough addresses of people (e.g. town/nearest town).

The Association has over 350 members.

The contact details are:
Tel: 01-2350965
Post: PO Box 3075, Dublin 2
E-mail: info@irishmecfs.org (currently not working - hopefully will be up again in next few days - in the meantime the old address, tkindlon@maths.tcd.ie still works)

Membership is 15 Euro per year. 4+ newsletters are sent out per year. While stocks last, new members get a complementary copy of the Overview of the Canadian Guidelines for ME/CFS and a complementary DVD of talks by Dr Jonathan Kerr and Prof. Malcolm Hooper.

There are members in every county in Ireland.

sorella · 27-01-2009 9:26am

Yes; misdiagnosed and wrongly treated for three decades, in the UK.

Which left a lot of other damage that is harder than the M.E. sometimes:)

So this is not a "normal" scenario by any imeans,. so worry not, please

I am left with a healthy mistrust of drs where this illness is concerned and a sturdy self reliance.
And a very wide knowledge of the illness and how to live with and within it.
The internet can be a wondrous resource.

When I came to Ireland, I made a little contact with the support group but not since then; too busy living and working now. Sometimes there is someone who needs a little support too; to know that it is not the end of all life to have this.

The attitude here seems better than in the UK too thankfully.

Blessings ....

Isaias Deafening Rodent wrote: »

It is not me thank God

http://www.imet.ie/

You have it 40 years?

Returned

sorella · 27-01-2009 9:30am

This sounds good, especailly for a newly diagnosed person.

I needed online material simply; attending a meeting etc would always have been too much for me, but reading online is fine.

And when I came to Ireland, I had already read Anne McIntyre's excellent book and knew how to live within this.

That book is the one I would advise anyone to buy; I gave mine away years ago to someone newly-diagnosed.

kangaroo wrote: »

There are two national ME/CFS organisations in the Rep. of Ireland, the Irish ME Trust and the Irish ME/CFS Association. [The Irish ME/CFS Association was previously called the Irish ME/CFS Support Group for many years; before that the Irish ME Support Group and before that the Irish ME Association so it's come full circle!]

It is the one I am involved with. I would be the first to admit that its website http://www.dublin.ie/websites/irishmecfsassociation/ does not compare with the Irish ME Trust website. The Irish ME/CFS Association is an all-volunteer group and we have had to prioritise and with all the other English websites out there, we have decided at this time not to concentrate on the website side (choosing to link to some informative sites instead).

All enquirers get a free information pack. Amongst other things, it contains the first names and numbers of over 100 patients around the country who are available to talk to others. If people join, they will get the telephone network list where there are dozens of extra people. People can give all sorts of information about themselves for this so people have an idea who they might like to contact. This also includes the rough addresses of people (e.g. town/nearest town).

The Association has over 350 members.

The contact details are:
Tel: 01-2350965
Post: PO Box 3075, Dublin 2
E-mail: info@irishmecfs.org (currently not working - hopefully will be up again in next few days - in the meantime the old address, tkindlon@maths.tcd.ie still works)

Membership is 15 Euro per year. 4+ newsletters are sent out per year. While stocks last, new members get a complementary copy of the Overview of the Canadian Guidelines for ME/CFS and a complementary DVD of talks by Dr Jonathan Kerr and Prof. Malcolm Hooper.

There are members in every county in Ireland.

sorella · 27-01-2009 9:36am

Jack; one small word of caution here.

Many drs use the term as a kind of blanket diagnosis when they cannot find anything clinically wrong. It is what is called a "diagnosis of exclusion" because all or most clinical tests show nothing amiss.

And some drs do not know the WHO definitions of the illness.

In the UK people get branded as fakes or mentally ill

It is wise to make sure that all avenues of investigation are followed. Many illnesses can have the same symptoms.

This is sometimes what a group with personal experience can help with in those first stages.

To reassure and confirm.

Isaias Deafening Rodent wrote: »

Looking for info on ME/CFS organisations in Ireland.Is anyone a member and what is the cost? Are they any good? For someone newly diagnosed, is there anything to be gained by joining?

by8auj6csd3ioq · 27-01-2009 1:08pm

kangaroo wrote: »

There are two national ME/CFS organisations in the Rep. of Ireland, the Irish ME Trust and the Irish ME/CFS Association. [The Irish ME/CFS Association was previously called the Irish ME/CFS Support Group for many years; before that the Irish ME Support Group and before that the Irish ME Association so it's come full circle!]

It is the one I am involved with. I would be the first to admit that its website http://www.dublin.ie/websites/irishmecfsassociation/ does not compare with the Irish ME Trust website. The Irish ME/CFS Association is an all-volunteer group and we have had to prioritise and with all the other English websites out there, we have decided at this time not to concentrate on the website side (choosing to link to some informative sites instead).

All enquirers get a free information pack. Amongst other things, it contains the first names and numbers of over 100 patients around the country who are available to talk to others. If people join, they will get the telephone network list where there are dozens of extra people. People can give all sorts of information about themselves for this so people have an idea who they might like to contact. This also includes the rough addresses of people (e.g. town/nearest town).

The Association has over 350 members.

The contact details are:
Tel: 01-2350965
Post: PO Box 3075, Dublin 2
E-mail: info@irishmecfs.org (currently not working - hopefully will be up again in next few days - in the meantime the old address, tkindlon@maths.tcd.ie still works)

Membership is 15 Euro per year. 4+ newsletters are sent out per year. While stocks last, new members get a complementary copy of the Overview of the Canadian Guidelines for ME/CFS and a complementary DVD of talks by Dr Jonathan Kerr and Prof. Malcolm Hooper.

There are members in every county in Ireland.

how long you involved with them? Can they give any details over email?

kangaroo · 27-01-2009 1:14pm

sorella wrote: »

And when I came to Ireland, I had already read Anne McIntyre's excellent book and knew how to live within this.

We have a page of books. We include have "Dr Macintyre's book and/or Dr Shepherd's book" as essential reading on it.

kangaroo · 27-01-2009 1:20pm

Isaias Deafening Rodent wrote: »

how long you involved with them? Can they give any details over email?

I have been involved with them for 13 years.

The team dealing with E-mail enquirers can give some details by E-mail but the information pack hasn't been scanned in. It is a selection of articles from different sources that we thought was a good basis for beginners. But if you E-mail your address it can be posted out (i.e. you don't have to ring or post).

The Association also likes to get new members in. If we just give all the information by E-mail, people don't get a membership form and then are unlikely to join. If we don't have people's address, we also can't then send a sample newsletter which we tend to do maybe six months after people have contacted us which again brings in new members.

LegacyUser · 28-01-2009 6:55pm

kangaroo wrote: »

I have been involved with them for 13 years.

The team dealing with E-mail enquirers can give some details by E-mail but the information pack hasn't been scanned in. It is a selection of articles from different sources that we thought was a good basis for beginners. But if you E-mail your address it can be posted out (i.e. you don't have to ring or post).

The Association also likes to get new members in. If we just give all the information by E-mail, people don't get a membership form and then are unlikely to join. If we don't have people's address, we also can't then send a sample newsletter which we tend to do maybe six months after people have contacted us which again brings in new members.

what do you do in the organisation? what about people's privacy and confidentiality, do they have to give medical records? What is the difeerence between your organisation amd imet?

kangaroo · 28-01-2009 7:39pm

To be clear, we are quite happy to deal with people who E-mail anonymously or without their postal address. We have dealt with many people like this over the years. People don't have to give medical records of course.

It's just a trend I've noticed other groups mention that with the internet it's harder to get new members in which is why we like to have people's postal address. With the internet, theoretically there could be no-one from Ireland in specific illness associations because they can find a lot of information on the web etc. I would think that would be a shame.

The association isn't exactly making a huge profit with a membership of 15 Euro a year given most of the newsletters we send out weigh just under 250g, so that's not our motivation to get new members. It's just that if we don't get in new members, we don't have the people around the country on the telephone lists. Also some people who come forward then want to get more involved. But if we don't get new members we don't have this supply of people which is important in an all-volunteer group. There is no compunction to go on any of the telephone lists - some people want to be on the telephone lists, some don't.

My dinner is ready now so I'll leave that for now. Best wishes to everyone struggling with ME

_Whimsical_ · 29-01-2009 1:23am

kangaroo wrote: »

There are two national ME/CFS organisations in the Rep. of Ireland, the Irish ME Trust and the Irish ME/CFS Association. [The Irish ME/CFS Association was previously called the Irish ME/CFS Support Group for many years; before that the Irish ME Support Group and before that the Irish ME Association so it's come full circle!]

It is the one I am involved with. I would be the first to admit that its website http://www.dublin.ie/websites/irishmecfsassociation/ does not compare with the Irish ME Trust website. The Irish ME/CFS Association is an all-volunteer group and we have had to prioritise and with all the other English websites out there, we have decided at this time not to concentrate on the website side (choosing to link to some informative sites instead).

All enquirers get a free information pack. Amongst other things, it contains the first names and numbers of over 100 patients around the country who are available to talk to others. If people join, they will get the telephone network list where there are dozens of extra people. People can give all sorts of information about themselves for this so people have an idea who they might like to contact. This also includes the rough addresses of people (e.g. town/nearest town).

The Association has over 350 members.

The contact details are:
Tel: 01-2350965
Post: PO Box 3075, Dublin 2
E-mail: info@irishmecfs.org (currently not working - hopefully will be up again in next few days - in the meantime the old address, tkindlon@maths.tcd.ie still works)

Membership is 15 Euro per year. 4+ newsletters are sent out per year. While stocks last, new members get a complementary copy of the Overview of the Canadian Guidelines for ME/CFS and a complementary DVD of talks by Dr Jonathan Kerr and Prof. Malcolm Hooper.

There are members in every county in Ireland.

From personal experience I'd definitely recommend that anyone with M.E./C.F.S join this group. I've been a member for years and I've found their newsletters invaluable. They contain very helpful relevant articles on the latest research findings that give insight into the condition and more importantly give hope that there might be a treatment someday soon for it. There are lots of times that I've found information in these articles that I've been able to bring along to my doctor and inform him of things he hadn't yet been made aware of.Sometimes they have ended up informing the medical tests I've had and resulted in finding other diagnoses responsible for my ME/CFS symptoms that may have been ignored otherwise. The newsletters usually have personal stories in them and media coverage of CFS and ME. They can make you feel a bit less alone dealing with what is a pretty isolating illnessness.

Also the organisation is run by very helpful and understanding people. You can make an enquiry to them and they will do their best to find out what you need to know.

sorella · 29-01-2009 5:44am

I did all this at first... iternet groups etc.

After four decades, I tend now to focus as little as possible on the illness.

I know what helps and what doesn't; there seems to be sometmes - and I have seen this on other illnss support groups - so much seeking for recognition. Many get very bitter etc.

And spend precious energy chasing tests etc.

I honestly do nto give a fig any more if the dr or anyone thinks I am faking:) I KNOW I am ill.

You can get very introverted with this illness.

So I do what I can and am happy doing that; but then I am old now:)

And at peace with it all.

chilly wrote: »

From personal experience I'd definitely recommend that anyone with M.E./C.F.S join this group. I've been a member for years and I've found their newsletters invaluable. They contain very helpful relevant articles on the latest research findings that give insight into the condition and more importantly give hope that there might be a treatment someday soon for it. There are lots of times that I've found information in these articles that I've been able to bring along to my doctor and inform him of things he hadn't yet been made aware of.Sometimes they have ended up informing the medical tests I've had and resulted in finding other diagnoses responsible for my ME/CFS symptoms that may have been ignored otherwise. The newsletters usually have personal stories in them and media coverage of CFS and ME. They can make you feel a bit less alone dealing with what is a pretty isolating illnessness.

Also the organisation is run by very helpful and understanding people. You can make an enquiry to them and they will do their best to find out what you need to know.

_Whimsical_ · 29-01-2009 5:15pm

sorella wrote: »

I did all this at first... iternet groups etc.

After four decades, I tend now to focus as little as possible on the illness.

I know what helps and what doesn't; there seems to be sometmes - and I have seen this on other illnss support groups - so much seeking for recognition. Many get very bitter etc.

And spend precious energy chasing tests etc.

I honestly do nto give a fig any more if the dr or anyone thinks I am faking:) I KNOW I am ill.

You can get very introverted with this illness.

So I do what I can and am happy doing that; but then I am old now:)

And at peace with it all.

I can somewhat understand where you are coming from Sorella. I am very sorry to hear that you are ill so long but glad that your illness has reached a pitch that you can now at least bear.I truely hope that this will continue for you and wish you the best of luck with every good wish that you will improve.

I'm sure you know that CFS, like every illness comes in varying degrees of severity.There are alot of young people who are not able to carry on any semblance of a life because of the severe disablement associated with different types of CFS.They cannot live around their symptoms and are not well enough to find joy in the little things.Illness can be at a level of severity where you can reach no peace at all with it.
I think in particular of a young Irish patient of less that 15 years old who has spent the greatest part of the last 5 years in bed with severe symptoms and of another teenager who has spent several years in a wheelchair because of CFS. I'm sure you would not advocate that in the face of this degree of extreme illness that these children should give up and accept their lot or that support, research or greater medical understanding would not be of use to them.Many people do not realise that situations as dire as these examples are the fate of 25% of people diagnosed with CFS.

Many illnesses have experienced dark days of medical misunderstanding. Only 30 years ago many MS patients were told their symptoms were physcosomatic.There was a time that Autism was referred to in medical circles as "Refridgerator Mother Syndrome" and believed to be the result of emotional ineptitude on the part of the mother. The history of medicine is littered with examples like this. In these cases and in the case of people who are severely ill with CFS the issue cannot simply be "does the doctor think I'm faking?".If you are very ill the issue has to be "how can I get better...how can I have the symptoms that are making my life unbearavle relieved?".

There is only one way forward and it is through recognition of the illness , medical research and eventual treatment. If that has been the case with MS,Cancer and numerous other illness why would CFS be any different?

I have found that the Irish ME/CFS Assoc support group have done trojan work in promoting awareness of CFS and in providing information to patients on very important research into the subject.They also provide support to patients who very much need and deserve it and who find it no where else.Far from being bitter people I have found that they have tried their best to work on behalf of others despite being ill themselves.
In terms of internet support groups in general I think in any internet situation where people are brought together by a mutual interest alone you will have personality clashes and find bitter argumentative types who just aren't on the same page as yourself. (just look at boards.ie!:))This should not be reason enough to dismiss the good they also do however.

sorella · 31-01-2009 5:12pm

Thank you fro this.

I need to add that I spend most of each day in bed; I am old now and used to this.

And I was in my 20s when it happened.

But I truly believe that you must come to terms with what is there; and that this can be done and that this is a healing in itself.

And that you can always find beauty and comfort. I always could - when was allowed to do so.

And no it is not giving up; there is a good way to fight illness and a less good way.

And I am not dismissing anyone or anything. Trust me on that.

The research will go on whether I know about it or not...

My task these days is to do as much as i can fo those who have far, far less than I have ever had. I am you see a Nun. So my days are in prayer and in the work of my hands to support my Sisters who care for abandoned babies in India. Tiny dotes dumped in the street.

This I can do from my bed, you see.

And I can teach via the internet also; from my bed

And this is deeply fulfilling.

Very few even know i am ill; I am Enclosed here and rarely out.

Because I refuse to be identified through an illness.

I know this illness inside out now; and that drs cannot help. Just now I am getting prescription pain relief for the Raynauds - but I told the dr what I needed:)

Which you can do in ireland and could not in the UK.

The scene in the UK is dreadful.
I ended up with no medical care at all. Stigmatised.

I am sure the groups do fine work; I mean that.

And if it helps you, then that is great.

But my approach is different and always has been.

I read and researched widely.

And sometimes Jesus brings to me sufferers who I can counsel.

So we all work and walk on.

Blessings this day...

NB Sorella is Italian for Sister:)

chilly wrote: »

I can somewhat understand where you are coming from Sorella. I am very sorry to hear that you are ill so long but glad that your illness has reached a pitch that you can now at least bear.I truely hope that this will continue for you and wish you the best of luck with every good wish that you will improve.

I'm sure you know that CFS, like every illness comes in varying degrees of severity.There are alot of young people who are not able to carry on any semblance of a life because of the severe disablement associated with different types of CFS.They cannot live around their symptoms and are not well enough to find joy in the little things.Illness can be at a level of severity where you can reach no peace at all with it.
I think in particular of a young Irish patient of less that 15 years old who has spent the greatest part of the last 5 years in bed with severe symptoms and of another teenager who has spent several years in a wheelchair because of CFS. I'm sure you would not advocate that in the face of this degree of extreme illness that these children should give up and accept their lot or that support, research or greater medical understanding would not be of use to them.Many people do not realise that situations as dire as these examples are the fate of 25% of people diagnosed with CFS.

Many illnesses have experienced dark days of medical misunderstanding. Only 30 years ago many MS patients were told their symptoms were physcosomatic.There was a time that Autism was referred to in medical circles as "Refridgerator Mother Syndrome" and believed to be the result of emotional ineptitude on the part of the mother. The history of medicine is littered with examples like this. In these cases and in the case of people who are severely ill with CFS the issue cannot simply be "does the doctor think I'm faking?".If you are very ill the issue has to be "how can I get better...how can I have the symptoms that are making my life unbearavle relieved?".

There is only one way forward and it is through recognition of the illness , medical research and eventual treatment. If that has been the case with MS,Cancer and numerous other illness why would CFS be any different?

I have found that the Irish ME/CFS Assoc support group have done trojan work in promoting awareness of CFS and in providing information to patients on very important research into the subject.They also provide support to patients who very much need and deserve it and who find it no where else.Far from being bitter people I have found that they have tried their best to work on behalf of others despite being ill themselves.
In terms of internet support groups in general I think in any internet situation where people are brought together by a mutual interest alone you will have personality clashes and find bitter argumentative types who just aren't on the same page as yourself. (just look at boards.ie!:))This should not be reason enough to dismiss the good they also do however.

April Raine · 08-02-2009 11:44pm

kangaroo wrote: »

[The Irish ME/CFS Association was previously called the Irish ME/CFS Support Group for many years; before that the Irish ME Support Group and before that the Irish ME Association so it's come full circle!]

why the name change it is to do with being a charity

kangaroo · 08-02-2009 11:50pm

April Raine wrote: »

why the name change

Quick reply: The organisation was first started to get smaller in the early 90s (after an initial rapid expansion with the first wave of media coverage in the late 80s) and was concentrated in Dublin so the people at the time decided support group was a better title.

CFS was included as many people get diagnosed under the heading CFS and might not click that an ME organisation could be useful for them.

The recent name change was partly because the organisation is now pretty evenly spread throughout the country (proportional to the population). Also, the organsiation has given €60,000 to each of two research funds (the CFS Research Foundation and ME Research UK (formerly known as MERGE); the full title, the Irish ME/CFS Association - for Information, Support and Research gets across better the full extent of the organisation's work people felt more than "the Irish ME/CFS Support Group".

There are probably other issues but this gives an idea of the reasoning. Anyway no more time to write now.

The_Conductor · 26-04-2009 10:05am

Guys- get on topic, and stay on topic- or else I'm using the IP register to block anonymous posting- if necessary by bulk approach.

We allow anonymous posting to allow people discuss things which they would rather not do under their usual login IDs (you'd be surprised at the number of us who know each other around here), not to allow people launch a carte blanche vendetta against other random people on the internet.

Do it again- you have been warned- it may be anonymous posting- but I do have IP addresses and am more than willing to act on it.

Regards,

SMcCarrick

Ps- if other people notice inappropriate posting or behaviour on the part of people in this forum- please use the report post function (its the exclamation mark in the red triangle at the bottom left hand corner of the pane). I moderate 4 fora- and do not have internet access during work hours- I do not get a chance to read through absolutely everything. I get an e-mail with a link to specific posts- when people report them. Please use this function- it keeps threads neat and tidy, it minimises inappropriate posting on the part of others, and it makes the jobs of moderators a lot more pertinent.

Tick Talk · 08-05-2009 12:45am

Hi all - I was diagnosed with ME 2 years ago and joined Irish ME Trust and find the magazine Interaction very helpful. Just at the end of last year I was diagnosed with Lyme so after taking months of coming to terms with having one disease I then find I'm having to come to terms with another! Of course both are similar in that ME and Lyme are both chronic illnesses (Lyme becomes chronic if not treated in the early stages), both can cause major disruption to the immune system and both are seriously debilitating.

If anyone remembers being bitten by a tick they might have Lyme disease too. Further info. on symptoms can be found at http://www.facebook.com/group.php?gid=44960753282.

I wish you all well in your recovery

A useful article on the overlap on ME and Lyme can be found at: http://www.mesupport.co.uk/index.php?page=borreliosis-lyme-m-e

noel123ie · 11-05-2009 10:16am

Hi there

My girlfriend has had ME for 10 years now and also

http://en.wikipedia.org/wiki/Graves'_disease

She has tried various natural remedies but main issue is it takes her weeks to get over flu, cold etc

Are there any treatments she could try.

She was advised go to an immunologist

Is there anyone here in Ireland/ UK we could speak to go see for help?

Any consultant maybe?

Thanks

Noel

LegacyUser · 18-05-2009 7:02pm

Tick Talk wrote: »

Hi all - I was diagnosed with ME 2 years ago and joined Irish ME Trust and find the magazine Interaction very helpful. Just at the end of last year I was diagnosed with Lyme so after taking months of coming to terms with having one disease I then find I'm having to come to terms with another! Of course both are similar in that ME and Lyme are both chronic illnesses (Lyme becomes chronic if not treated in the early stages), both can cause major disruption to the immune system and both are seriously debilitating.

If anyone remembers being bitten by a tick they might have Lyme disease too. Further info. on symptoms can be found at http://www.facebook.com/group.php?gid=44960753282.

I wish you all well in your recovery

A useful article on the overlap on ME and Lyme can be found at: http://www.mesupport.co.uk/index.php?page=borreliosis-lyme-m-e

At least the Lyme is treatable to my knowledge. A lot of folk who thought they had ME had in fact got lyme and had treatment and got better. I am not sure how good the treatment of lyme is in ireland though. There is a eurolyme yahoo group you might find helpful

In more general terms there seems to be an awful lot of ME turning out to be a misdiagnosis though there is resistance to this belief in some areas

LegacyUser · 18-05-2009 7:20pm

Unregistered wrote: »

At least the Lyme is treatable to my knowledge.

That's probably why the theory is attractive to some. There are trends in the ME area e.g. lots of people are convinced it Candida; then lots of people think it's hyperventilation; lots of people think it's thyroid problems etc.

There are lots and lots of theories about what might cause ME symptoms. And even if some people respond to antibiotics or other treatments recommended, it doesn't prove Lyme was the problem. It could have been treating other microorganisms such as C. Pneumonia, Mycoplasma or because the immunomodulatory effect of antibiotics.

The_Conductor · 01-06-2009 7:21pm

This thread title and the OP requested details of ME support groups in Ireland. Keep ontopic. If you have other information *of direct relevance* please run it by a moderator prior to posting it here. Regards, SMcCarrick

_Whimsical_ · 13-06-2009 1:15am

There is going to be some new coverage given to the subject of biomedical research into and recent gene expression studies in ME/CFS on Sky News tomorrow over the course of the day.

It's not exactly on topic but I just thought some of you might like to watch it as it's not often that research into this illness gets much media attention.

Tick Talk · 29-07-2009 11:37am

Just to say that I recently came back from the therapy week held by the Irish ME Trust. There were loads of people there, some with fibromyalgia, some with Lyme and some with ME and others with a combination of all 3 (myself included). It was great to meet up with other sufferers as being a long term ill patient can cause people to be cut off from society and when you do go out no-one understands the varying levels of pain and energy that hits you through the day. Other ME patients would understand so it was great to talk to someone who nods and appreciates exactly what you're saying! If anyone would like details say for next year then the website link is http://www.imet.ie/imet_website/meetings_events/me_therapy_week.html

As the saying goes - it's good to talk!

LegacyUser · 10-08-2009 12:14pm

I do not understand why ME is lumped together with Lyme and fibro. Why would imet bring all those together under the umbrella of ME.

Is it becasue ME is often a misdiagnosis or does not exist as a discrete entity

Niall1975 · 10-08-2009 4:04pm

Hi guys, my girlfriend has being suffering for the last year, she had an mri and it was normal, so m s was ruled out. she has spent a fortune going to different consults trying to find the answer to her illness.

She has muscle weakness and in constant pain. I just wish i could help her get a diagnoses.

For those of you diagnosed with ME how did you get diagnosed? if you don't mind me asking.

Did your consultant rules out other possible illness before diagnosing you?

Thankyou for any help.

Niall.

kangaroo · 15-08-2009 10:29pm

Unregistered wrote: »

I do not understand why ME is lumped together with Lyme and fibro. Why would imet bring all those together under the umbrella of ME.

Is it becasue ME is often a misdiagnosis or does not exist as a discrete entity

Not going to try to answer the first part but ME does exist as a discrete identity separate from Fibromyalgia and Lyme.

kangaroo · 15-08-2009 10:44pm

Niall1975 wrote: »

Hi guys, my girlfriend has being suffering for the last year, she had an mri and it was normal, so m s was ruled out. she has spent a fortune going to different consults trying to find the answer to her illness.

She has muscle weakness and in constant pain. I just wish i could help her get a diagnoses.

For those of you diagnosed with ME how did you get diagnosed? if you don't mind me asking.

Did your consultant rules out other possible illness before diagnosing you?

Thankyou for any help.
Niall.

I got diagnosed by Prof. Austin Darragh in the Blackrock Clinic (who then moved to see patients near Dunboyne). He's now in his 80s and is not taking on new patients as far as I know for a few years now. I think he held on to existing patients for a period (as opposed to dealing with new patients) but I don't think new people have been getting to see him for years and most likely he is not seeing existing patients either. He gave me a provisional diagnosis after taking a long personal history and doing a physical examination along with examining test results I brought along from other doctors (appointment was over an hour - can't remember the exact length).

It is certainly important to rule other things out. But some people can get frustrated that doctors leave them in limbo trying to rule everything out when they could have given a provisional diagnosis of ME in the meantime. In the UK, things are a bit different to the Rep. of Ireland - patients in the UK are often frustrated that many diagnoses haven't been ruled out to their satisfaction. Of course, this can happen in Ireland too but there appears to be a difference between the two countries.

Irish consultants can be good at ruling other things out. Many are not so on the ball for spotting ME (or Chronic Fatigue Syndrome as it is also commonly known). Others may give a tentative diagnosis. But as I say, it can be a bit of an advantage as they can think they're failing if they don't diagnose or give a diagnosis of ME or Chronic Fatigue Syndrome so can be reasonably thorough.

Given this is supposed to be a thread on patient support groups, I thought I'd point out that ME patient support groups would have a reasonable idea of the consultants or other doctors (e.g. GPs who could be described as having a special interest) who diagnose cases and see quite a lot of cases.

Niall1975 · 17-08-2009 4:13pm

Thanks for the advice Kangroo, my girlfriend is curretly under a neurologist at the moment. She is currently being investigated for muscle dystrophy.

She gets her good days and bad days but she is no longer able to work, she would love to go walking and do the house work but can't. It's very sad to see a 29yr old woman like this.:(

ME Support Groups in Ireland

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