ME/CFS Awareness Month talks by Dr. William Weir in Dublin and Galway

kangaroo

ME/CFS Awareness Month talks by Dr. William Weir in Dublin and Galway

The title of both talks is: "25 years of experience with ME: past reflections, present difficulties and future possibilities.”

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Saturday, May 29

Mount Herbert Hotel, Herbert Road, off Lansdowne Road, Dublin 4, Republic of Ireland, 1pm

Irish ME/CFS Association, ME Awareness Month talk.

Speaker: Dr William Weir, ME medical expert and a consultant in infectious diseases, who sees patients in London and Northern Ireland.

Admission 5 Euro (on the door).

All welcome.

For more information: Irish ME/CFS Association, PO Box 3075, Dublin 2. Tel: (01) 2350965 Email: info@irishmecfs.org Website: www.irishmecfs.org

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Sunday, May 30

Courtyard Hotel, Headford Point (just off the Kirwin Roundabout and near the Galway Shopping Centre), Galway, Republic of Ireland, 2pm

Irish ME/CFS Association in conjunction with the Galway ME Support Group, ME Awareness Month talk.

Speaker: Dr William Weir, ME medical expert and a consultant in infectious diseases, who sees patients in London and Northern Ireland.

Admission 5 Euro (on the door).

All welcome.

For more information: Irish ME/CFS Association, PO Box 3075, Dublin 2. Tel: (01) 2350965 Email: info@irishmecfs.org. Website: www.irishmecfs.org

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Around 12,000 people in Ireland are thought to suffer from ME, now often diagnosed under the name Chronic Fatigue Syndrome (CFS). Symptoms include overwhelming flu-like exhaustion made worse by even minor exertion (physical or intellectual exertion), muscle and joint pains, sore throats, swollen glands, disturbed sleep, impaired concentration and memory and headaches. A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.

kangaroo

kangaroo wrote: »

ME/CFS Awareness Month talks by Dr. William Weir in Dublin and Galway

The title of both talks is: "25 years of experience with ME: past reflections, present difficulties and future possibilities.”

---

Saturday, May 29

Mount Herbert Hotel, Herbert Road, off Lansdowne Road, Dublin 4, Republic of Ireland, 1pm

Irish ME/CFS Association, ME Awareness Month talk.

Speaker: Dr William Weir, ME medical expert and a consultant in infectious diseases, who sees patients in London and Northern Ireland.

Admission 5 Euro (on the door).

All welcome.

For more information: Irish ME/CFS Association, PO Box 3075, Dublin 2. Tel: (01) 2350965 Email: info@irishmecfs.org Website: www.irishmecfs.org

---

Sunday, May 30

Courtyard Hotel, Headford Point (just off the Kirwin Roundabout and near the Galway Shopping Centre), Galway, Republic of Ireland, 2pm

Irish ME/CFS Association in conjunction with the Galway ME Support Group, ME Awareness Month talk.

Speaker: Dr William Weir, ME medical expert and a consultant in infectious diseases, who sees patients in London and Northern Ireland.

Admission 5 Euro (on the door).

All welcome.

For more information: Irish ME/CFS Association, PO Box 3075, Dublin 2. Tel: (01) 2350965 Email: info@irishmecfs.org. Website: www.irishmecfs.org

---

Around 12,000 people in Ireland are thought to suffer from ME, now often diagnosed under the name Chronic Fatigue Syndrome (CFS). Symptoms include overwhelming flu-like exhaustion made worse by even minor exertion (physical or intellectual exertion), muscle and joint pains, sore throats, swollen glands, disturbed sleep, impaired concentration and memory and headaches. A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.

Dr. Weir is scheduled to be on the Afternoon Show tomorrow, Monday (repeated Tuesday morning, I believe). I think he's going to be on around 5pm. A patient was supposed to be on at 4pm and the doctor would answer questions later in the programme - that might still be the plan (they initially had a different doctor lined up as it didn't look like Dr. Weir would be free which is why I am not definite about some of the details).

kangaroo

I have heard from the patient now she's on at 5pm like Dr. Weir.

http://www.rte.ie/tv/theafternoonshow/

The Afternoon Show
RTÉ One, Weekdays, 4.00pm

M.E. is a seriously debilitating illness affecting approx 12,000 people in Ireland, with 70% of these people being undiagnosed. We have an M.E. patient and Dr. William Weir of the Medical British ME Association to tell us more about the condition.

LegacyUser

Around 12,000 people in Ireland are thought to suffer from ME

Thought by who.? That is not a statistic.

kangaroo

The piece on Afternoon Show with Dr. Weir can be watched at:
http://www.rte.ie/player/#v=1072438
0:53:13-01:02:07

It is available till Mon May 31, 2010.

kangaroo

unregistered wrote: »

Thought by who.? That is not a statistic.

Extrapolating from figures that have been accepted in the UK (used in official documents). There has not been good epidemiological research done in Ireland which is why the statement is not more definite. I imagine it is the case for quite a lot of illnesses in Ireland that figures quoted are extrapolated from research in other countries (and some groups may use more definite language e.g. "there are x people with condition y").

LegacyUser

i think http://www.hfme.org/wlicdcodes.htm is the better source of info on ME.

kangaroo

Interview with Kay Gilderdale, GMTV, May 26

[Kay's daughter, Lynn, took her own life after being bedbound for 17 years with very severe M.E. so, naturally, some people may find this a bit upsetting.
But she calls for more research, etc]

http://tinyurl.com/37u48c8 i.e.
http://www.gm.tv/videos/?vxSiteId=85319fc3-9ce2-44d7-b3ec-c25a155372ac&vxChannel=GMTV+Top+Stories&vxClipId=1441_gmtv_9165&vxBitrate=700%20

kangaroo

Both William Weir and the producer have told me they aim to have Dr. Weir on Drivetime (RTE Radio 1) sometime between 6pm and 6.30pm today.

Of course, things can go wrong so don't blame me if it isn't on.

LegacyUser

Dr Weir gave a good realistic interview and was well interviewed by Mary Wilson who allowed him to air his views. He seems to know his stuff and pointed out that patients can be helped to help themselves. I would suggest people listen back to it on Drivetime though it does not seem to be available now?

LegacyUser

Good interview http://www.rte.ie/news/drivetime/index_av.html
about 1.54 in

LegacyUser

Cheers for this, just back from the talk and i enjoyed it.

LegacyUser

whatdidyousay? wrote: »

Cheers for this, just back from the talk and i enjoyed it.

could you say more about it? how many were there? On radio he said that it is caused by the immune system being switched on and won't switch off. Did he elaborate on this?

On the radio he gave an example of the typical sufferer who he said was women in their thirties or forties who tend to be mothers with small children who have been subject to usual stresses or more than usual stresses with difficult relationships/divorces or bereavements, and may have been quite stressed within the preceding year
Would it be the stress that causes the immune system to stay on after an infection?

He also warned that anyone who claims to have a magic bullet to be able to cure this is being less than honest. That is a fair warning as there are a lot of charlatans who will take advantage of people who are sick

kangaroo

unregistered wrote: »

He seems to know his stuff and pointed out that patients can be helped to help themselves. I would suggest people listen back to it on Drivetime though it does not seem to be available now?

I don't think it was a particular great interview myself: it got a bit bogged down with what might be a typical sufferer.

Yes, Dr. Weir thinks patients can be helped by the self-management strategy, pacing.

By the way, there was good attendances at both of the meetings - approx. 97 and 98 respectively.

LegacyUser

kangaroo wrote: »

I don't think it was a particular great interview myself: it got a bit bogged down with what might be a typical sufferer.

that was interesting and enlightening in itself

Jeweliette

unregistered wrote: »

Dr Weir gave a good realistic interview and was well interviewed by Mary Wilson who allowed him to air his views. He seems to know his stuff and pointed out that patients can be helped to help themselves. I would suggest people listen back to it on Drivetime though it does not seem to be available now?

There is a very good interview by Dr Weir here . I thought he sounded a different note in it than he did in his radio interview but then the article is more indept I suppose. It's easy reading and quite interesting.

LegacyUser

unregistered wrote: »

could you say more about it? how many were there? On radio he said that it is caused by the immune system being switched on and won't switch off. Did he elaborate on this?

On the radio he gave an example of the typical sufferer who he said was women in their thirties or forties who tend to be mothers with small children who have been subject to usual stresses or more than usual stresses with difficult relationships/divorces or bereavements, and may have been quite stressed within the preceding year
Would it be the stress that causes the immune system to stay on after an infection?

He also warned that anyone who claims to have a magic bullet to be able to cure this is being less than honest. That is a fair warning as there are a lot of charlatans who will take advantage of people who are sick

As a CFS/ME sufferer for the past 10 years this is the first talk i have gone to on the subject. It pretty much cleared up any queries or doubts i had in relation to the illness and i feel so much better for it.
In relation to your own questions i can only answer from my own experiences, i don't want to put up any answers here that people may take as advice.
I recorded the talk on my MP3 player so if you want i can PM you and maybe arrange for you to hear it.

The only thing that really irked me at the talk were some of the questions at the end. Some people dragged WAAAAYYYY of topic and personally i found some questions to put it mildly bloody annoying. Thankfully Dr Weir handled them well and didnt get bogged down.

So cheers Kangaroo for this thread, i feel better about my illness now.

iamskippy

kangaroo wrote: »

I don't think it was a particular great interview myself: it got a bit bogged down with what might be a typical sufferer. .

I don'tthink he was bogged down.After 25 years Dr Weir would be well versed in what a typical patient is. I thought he spoke very well.

kangaroo

iamskippy wrote: »

I don'tthink he was bogged down.After 25 years Dr Weir would be well versed in what a typical patient is.

Well, earlier in the interview he said female:male ratio was around 3:2 so under that scenario, at least 40% (but probably a lot more) were excluded by the typical patient that the interviewer was looking for (he said females in 30s or 40s in case people are curious (maybe even women in 30s or 40s with kids specifically?).

I think more interesting things could have been said with the time - like some of the things mentioned at his talks. So I was just disappointed that these more interesting things weren't said.

iamskippy

kangaroo wrote: »

Well, earlier in the interview he said female:male ratio was around 3:2 so under that scenario, at least 40% (but probably a lot more) were excluded by the typical patient that the interviewer was looking for .

I do not agree. How can you tell what the interviewer was looking for? .She just asked about typical patient and he told her and did so in some detail. Given his status and experience I accept that

kangaroo

iamskippy wrote: »

I do not agree. How can you tell what the interviewer was looking for? .She just asked about typical patient and he told her and did so in some detail.

Just to be clear, I'm not saying that the interviewer had a particular answer in mind. But she did ask for a gender and age profile, then what the typical patient would be like and came back to the same question again to ask what was the typical woman in her 30s and 40s (i.e. within that group) (I just listened again). All within the five minute interview. All I think is that more interesting things could be asked/covered - even basic things like what are the symptoms.

kangaroo

unregistered wrote: »

could you say more about it? how many were there? On radio he said that it is caused by the immune system being switched on and won't switch off. Did he elaborate on this?

Here is a summary of his oral submission to the Group on Scientific Research into ME (aka Gibson Inquiry), an inquiry run by UK parliamentarians, from a few years ago.

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This was available at: http://meagibsoninquiry.blogspot.com/ but link doesn't seem to work now.

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Evidence to the Gibson Inquiry

The ME Association has set up this blog so that people can read evidence given to the Gibson Inquiry on the state of ME research in the UK. We shall be adding to it as more evidence is made available. Members of the Inquiry have announced that they plan to complete their Report by the end of October 2006.

[..]

FOURTH DAY - Monday July 10 Dr William Weir, Consultant Phsyician and ME Specialist

This summary of Dr Weir's presentation has been prepared by the representative of The ME Association who attended the hearing.

Presentation by Dr William Weir: Consultant Physician and ME Specialist in London.

Dr Weir:

Described how he came to be involved in seeing ME/CFS patients through his work as a specialist in infectious diseases both here and abroad.

Explained how it was not uncommon to find people returning from tropical countries with this illness - sometimes referred to as 'tropical neurasthenia' - following an infective episode.

Emphasised that these were not the sort of people who had anything to gain from sick role behaviour.

Provided some interesting historical accounts of how illnesses such as syphilis and Parkinson's disease (once thought of as a man's natural desire to masturbate!) had originally been mis-labelled as psychosocial problems - mainly because their cause at the time was unknown.

Dismissed the way in which ME/CFS was being increasingly termed a biopsychosocial illness - often because this was an easy philophosical position to take when doctors do not understand the cause of an illness.

Stated quite clearly that ME/CFS has a biomedical basis that is not being properly researched.

Described how mind and body are closely interlinked and explained how non-drug management approaches such as meditation could be helpful to some people.

Concluded that bad management often resulted in poor prognosis.

iamskippy

kangaroo wrote: »

Just to be clear, I'm not saying that the interviewer had a particular answer in mind. But she did ask for a gender and age profile, then what the typical patient would be like and came back to the same question again to ask what was the typical woman in her 30s and 40s .

and he gave it quite eloquently i thought and also gave clarification that stress can be a factor.i came across a link touting hypnosis as a cure* but i think it is a charade though it may help with the stress

seemed too easy to be true*

iamskippy

kangaroo wrote: »

Here is a summary of his oral submission to the Group on Scientific Research into ME (aka Gibson Inquiry), an inquiry run by UK parliamentarians, from a few years ago.

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This was available at: http://meagibsoninquiry.blogspot.com/ but link doesn't seem to work now.

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is his talk on sat/sun available anywhere on the web? I saw a link to his practise in London but no email addrerss

kangaroo

iamskippy wrote: »

is his talk on sat/sun available anywhere on the web?

No.

iamskippy

kangaroo wrote: »

No.

will it be uploaded or available?

Jeweliette

whatdidyousay? wrote: »

I recorded the talk on my MP3 player so if you want i can PM you and maybe arrange for you to hear it.
.

Hey "whatdidyousay?"

I just noticed this thread tonight and I was wondering if you still have the copy of the talk Dr Weir did. I was too unwell to go to it but I'd be very interested to hear the talk. Would you possibly be willing to put it on a disc and post it to me or upload somewhere online or something .

I'd be willing to pay you for postage if necessary.

I can't PM you as you appear to be posting using the anonymous poster function but you can reply to me via PM or here if you like.

Thank you.

PrimalTherapy

Jeweliette wrote: »

Hey "whatdidyousay?"

I just noticed this thread tonight and I was wondering if you still have the copy of the talk Dr Weir did. I was too unwell to go to it but I'd be very interested to hear the talk. Would you possibly be willing to put it on a disc and post it to me or upload somewhere online or something .

I'd be willing to pay you for postage if necessary.

I can't PM you as you appear to be posting using the anonymous poster function but you can reply to me via PM or here if you like.

Thank you.

He can't pm you while an anon poster can he? I don't think so.

Jeweliette

PrimalTherapy wrote: »

He can't pm you while an anon poster can he? I don't think so.

No but he/she could send me a PM using their registered nick and I would keep their identity confidential.