ME and metabolic rate

noel123ie

Hi

My girlfriend has ME and has been advised to get a Metabolic rate test done

Does anyone know where this can be done please in Munster if at all possible?

Many Thanks
Noel

sam34

who advised her to get this done?

can they not also advise where it can be done?

has she asked her doctor about where it can be done?

noel123ie

We went to a discussion by a US doctor re ME and she advised this was a good test so we have tried most other things so worth a go

If her doc knew would not be on here bud

sam34

noel123ie wrote: »

If her doc knew would not be on here bud

you'd be surprised how many people post on here and are seemingly happy to take advice from random strangers but wont discuss something with their doctors!

never ceases to amaze me

noel123ie

Who said we have not discussed with our doctor?

If someone advised eg " The XX hospital does this " it would not matter where advice was got it will not affect the quality of care recieved

Thanks
Noel

sam34

noel123ie wrote: »

Who said we have not discussed with our doctor?

If someone advised eg " The XX hospital does this " it would not matter where advice was got it will not affect the quality of care recieved

Thanks
Noel

i didnt say ye hadnt discussed it with her doctor, i said many people turn to the internet for advice rather than their docs.

the fact that you referred to her doc - which i quoted- was a sign, i felt, that ye had discussed it.



sourcing advice from the internet can be very very dodgy. something like "x hospital does this procedure" is harmless enough, but other stuff can be frankly dangerous.

eg - i locked a thread yesterday because someone said "my liver test result was 25, what does this mean?" and someone came along and replied "thats fine, nothing wrong, dont worry"

now, firstly, we dont know what specific liver test result the person was referring to, and there are quite a few, so saying that result is fine is completely inaccurate

secondly, taken out of context, this result is meaningless

that person should have been discussion it with one person only - their doctor.

before you jump down my throat and point out that you didnt look for specific medical advice like that, i know you didnt

however, i always think a good starting point is to refer someone back to their doctor for discussion and further advice, thats all

TheGobb

sam34 wrote: »

sourcing advice from the internet can be very very dodgy.

in relation to ME be careful what advice you take from groups too. They sometimes say stress/trauma will not cause ME but I have been told by a renowned expert that it can.I stress can not will. Unless the groups, some who diagnose themselves ,know more than world experts I would be carefiul what i believe from them.

In relation to Metabolic rate test I would second the question as to who advised it and if they cannot say where it is done. Have you asked GP?

kangaroo

TheGobb wrote: »

I have been told by a renowned expert that it can.

OP, be careful what experts/"experts" say - there is not a consensus in relation to lots of matters relating to M.E. (which can be a good thing in some circumstances - research is going in lots of directions).

TheGobb wrote: »

They sometimes say stress/trauma will not cause ME

I just had a look again at the free info pack from a group I’m involved with.
It has a collection of articles from different sources.

The first article in it, by an English doctor, says:
“Doctors and scientists are still confused about what causes ME symptoms and the impact on sufferers’ lives is often underestimated.“
But stress is mentioned later:
There is no curative treatment, the best management is based on:
[..]
c) “Avoiding emotional and physical stress where possible
(this sort of comment - that stress can affect it - would be made in most of the articles)

The next article says:
"What causes M.E.?
M.E. is usually triggered by a viral illness such as ‘flu, glandular fever or even a cold, but other triggers such as vaccinations, exposure to chemicals, stress and accidents have been reported. For others, M.E. sets in gradually with no obvious cause”

Another article says: "There is no known single cause of ME/CFS, although for many it may be a viral trigger. Some sufferers may have a sudden onset, whilst for others it may be a slow and gradual process, with no easily identifiable trigger. ME/CFS can vary greatly in severity and duration”

As I’ve “outed” myself as somebody involved in a group, I thought I’d point out (as otherwise questions might be asked) that I’m not self-diagnosed. I was diagnosed by possibly/probably one of the most knowledgeable consultants in the last twenty years in Ireland (now nearly retired) and also more recently by a US doctor who could also be considered an expert. I've also had at least a couple of abnormal test results that back up the diagnosis.

TheGobb

You should identify yourself and your group. Your experience or you newsletter do not know everything. Stess and trauma can trigger it and cause a relapse. In a link i read yesterday you are quoted as saying the expert yopu refer to confirmed your diagnosis

sam34

TheGobb wrote: »

You should identify yourself and your group. Your experience or you newsletter do not know everything. Stess and trauma can trigger it and cause a relapse. In a link i read yesterday you are quoted as saying the expert yopu refer to confirmed your diagnosis

there is NO ONUS on anyone on this forum to identify themselves personally

kangaroo

TheGobb wrote: »

In a link i read yesterday you are quoted as saying the expert yopu refer to confirmed your diagnosis

Maybe that wasn't clear. The US doctor after an hour long appointment diagnosed ME/Chronic Fatigue Syndrome. He has subsequently put this in writing. I said "confirmed" because an Irish consultant diagnosed me previously.

TheGobb

sam34 wrote: »

there is NO ONUS on anyone on this forum to identify themselves personally

I am not going to waste time arguing with this guy. I know enough to keep away from his group. I am well read on ME and would not be involved with that group. All I say to the OP is to research for himself

From the link "Over the years his condition kept getting progressively worse until he was "virtually flat out," he recalls. Eventually, having happened upon an article on ME he did some further research at the library and discovered he had all the symptoms and was "a classic case". A visit to a specialist at the Blackrock Clinic finally confirmed that he had ME." My emphasis. It's hardly scientific

sam34

TheGobb wrote: »

I am not going to waste time arguing with this guy. I know enough to keep away from his group. I am well read on ME and would not be involved with that group. All I say to the OP is to research for himself

From the link "Over the years his condition kept getting progressively worse until he was "virtually flat out," he recalls. Eventually, having happened upon an article on ME he did some further research at the library and discovered he had all the symptoms and was "a classic case". A visit to a specialist at the Blackrock Clinic finally confirmed that he had ME." My emphasis. It's hardly scientific

fair enough, dont argue with him if you dont want to.

but still you have no right to demand he identify himself

kangaroo

TheGobb wrote: »

From the link "Over the years his condition kept getting progressively worse until he was "virtually flat out," he recalls. Eventually, having happened upon an article on ME he did some further research at the library and discovered he had all the symptoms and was "a classic case". A visit to a specialist at the Blackrock Clinic finally confirmed that he had ME." My emphasis. It's hardly scientific

After he took a history that took over an hour. He also did some blood tests and found I had low NK cells. I didn't pick that up from just imagining it. The US consultant used cardiograph impedance and I had a low reading. Again I didn't pick that up from just imagining it.

Lots of people with M.E. especially in the 80s and 90s were self-diagnosed initially. Most doctors weren't on the look out for it.

I misinterpreted what this person was saying earlier - I thought he was replying to what I wrote in this thread.

TheGobb

sam34 wrote: »

but still you have no right to demand he identify himself

he does not have to to meas i know his identity, I was referring to other people. If he contradicts me on behalf of a group the OP should know who is saying it. I am doing a blog on ME in ireland soon and as it will be my blog it cannot be suppressed. interesting things to tell

TheGobb

kangaroo wrote: »

After he took a history that took over an hour. He also did some blood tests and found I had low NK cells. I didn't pick that up from just imagining it. The US consultant used cardiograph impedance and I had a low reading. Again I didn't pick that up from just imagining it.

the part i refer to is the deciding a classic case from the library

Lots of people with M.E. especially in the 80s and 90s were self-diagnosed initially. Most doctors weren't on the look out for it.

It is not scientific though. You always write and claim about results of scientific experiments. Reading up in a library and deciding one is a classic case is not scientific. And why do doctors look out for it now? Because you told them the symptoms???

Therefore I repeat to the OP do your own research

sam34

TheGobb wrote: »

he does not have to to meas i know his identity, I was referring to other people. If he contradicts me on behalf of a group the OP should know who is saying it. I am doing a blog on ME in ireland soon and as it will be my blog it cannot be suppressed. interesting things to tell

you demanded he identify himself, as well as his group:

TheGobb wrote: »

You should identify yourself and your group.

i repeat, for the third time, that there is no onus on anyone posting on this forum to identify themselves personally, and you have no right to demand that. please dont do so again.

kangaroo

I really don’t know why I have to justify my diagnosis. As I said, two experts have both diagnosed me after detailed appointments and examinations of my records and have put this in writing. I have already mentioned two abnormal tests I have that back up the diagnosis. I forgot to mention the low body temperature – I don’t know how I can fake having a body temperature of around 96. Before I was diagnosed with M.E., I was diagnosed with IBS which is common in M.E. Physios noted points of tenderness in muscles which can also be common (see Ramsay’s description of M.E. for example). If over-tired or up to long, I can go white – ashen pallor is also part of M.E. These signs go along with the myriad of symptoms I have which mean I satisfy all the criteria for ME/CFS (there have been a few over the years).

This paper shows Irish GPs weren't that confident about diagnosing CFS in the past:
Br J Gen Pract. 1997 Oct;47(423):618-22.
Chronic debilitating fatigue in Irish general practice: a survey of general practitioners' experience.
Fitzgibbon EJ, Murphy D, O'Shea K, Kelleher C.
Department of Health Promotion, University College Galway, Ireland.
44% said "not so confident" and 22% said "not at all confident".

TheGobb

kangaroo wrote: »

I really don’t know why I have to justify my diagnosis. As I said, two experts have both diagnosed me after detailed appointments and examinations of my records and have put this in writing. I have already mentioned two abnormal tests I have that back up the diagnosis. I forgot to mention the low body temperature – I don’t know how I can fake having a body temperature of around 96. Before I was diagnosed with M.E., I was diagnosed with IBS which is common in M.E. Physios noted points of tenderness in muscles which can also be common (see Ramsay’s description of M.E. for example). If over-tired or up to long, I can go white – ashen pallor is also part of M.E. These signs go along with the myriad of symptoms I have which mean I satisfy all the criteria for ME/CFS (there have been a few over the years).

You do not have to justify it but do not tell othere based on a self diagnosis what is right

This paper shows Irish GPs weren't that confident about diagnosing CFS in the past:
Br J Gen Pract. 1997 Oct;47(423):618-22.
Chronic debilitating fatigue in Irish general practice: a survey of general practitioners' experience.
Fitzgibbon EJ, Murphy D, O'Shea K, Kelleher C.
Department of Health Promotion, University College Galway, Ireland.
44% said "not so confident" and 22% said "not at all confident".

And you who read a book in a library are going to tell them how

As for the mod i am doing a blog on mE where i can speak freely.Interestimng links on indymedia

Bugnug

I know two people who have overcome ME through good counselling.

TheGobb

Bugnug wrote: »

I know two people who have overcome ME through good counselling.

Can you elaborate? I know someone who was diagnosed with it and recovered substantially tbrough change of diet. Yet when going tyhroug a very stressful period relapsed somewhat. There is a psychological aspect to it as there is to any illness. Some people build a life around illness and then they are resistann to any change or other view

kangaroo

TheGobb wrote: »

And you who read a book in a library are going to tell them how

(Tempting though it is to reply with a smart comment) I was not quite as severe then. I also didn't read the whole book before going to the doctor. As I have pointed out, before there was not as much awareness as there is now, so GPs weren't really on the look out for it so it was quite common for people to have to bring up the possibility with their GP rather than the doctor always spotting it. One of the things we have worked on is raising the awareness levels for M.E. - that's why I put myself forward for that interview - lots of people would prefer to keep their lives private. You could be grateful that awareness levels are much better now than they were 15+ years ago.

sam34

TheGobb wrote: »

As for the mod i am doing a blog on mE where i can speak freely.Interestimng links on indymedia

say what you want on your own blog, i couldnt care less, tbh.

but on this forum, you have no right to hassle a fellow poster and demand they identify themselves.

you have no particular right to challenge them about their diagnosis either.

this is the fourth time i have told you that.

if you persist in arguing about it, you'll leave me no option but to ban you.

Bugnug

TheGobb wrote: »

Can you elaborate? I know someone who was diagnosed with it and recovered substantially tbrough change of diet. Yet when going tyhroug a very stressful period relapsed somewhat. There is a psychological aspect to it as there is to any illness.

Sure. One girl I knew fairly well she had a fairly traumatic experience as a teenager and after she had a couple of kids she went downhill, post natal depression, tired all of the time, suicidal. She got to the point where she had to get her husband to do everything for her. She was pretty much bed bound. It consumed their lives. They spent a fortune on doctors, and clinics she had been subscribed every shape and make of pill. She eventually tried counselling, go a great counsellor and got it sorted. She is now 100% and not a bother on her. She completely turned her life around.

TheGobb

Bugnug wrote: »

Sure. One girl I knew fairly well she had a fairly traumatic experience as a teenager and after she had a couple of kids she went downhill, post natal depression, tired all of the time, suicidal. She got to the point where she had to get her husband to do everything for her. She was pretty much bed bound. It consumed their lives. They spent a fortune on doctors, and clinics she had been subscribed every shape and make of pill. She eventually tried counselling, go a great counsellor and got it sorted. She is now 100% and not a bother on her. She completely turned her life around.

And the other?

Bugnug

TheGobb wrote: »

And the other?

Pretty much the same thing. I did not know her that well. She worked with my wife. She had to quit work and my wife told her about the girl we knew, she went to the same counsellor and got the same results.

TheGobb

kangaroo wrote: »

(Tempting though it is to reply with a smart comment) I was not quite as severe then. I also didn't read the whole book before going to the doctor. As I have pointed out, before there was not as much awareness as there is now, so GPs weren't really on the look out for it so it was quite common for people to have to bring up the possibility with their GP rather than the doctor always spotting it. One of the things we have worked on is raising the awareness levels for M.E. - that's why I put myself forward for that interview - lots of people would prefer to keep their lives private. You could be grateful that awareness levels are much better now than they were 15+ years ago.

Your group is very selective about the awareness ,it is only your opinion you want publicised.Someone else said he knew 2 people who had recovere through counselling. Doctor once told me he does not rely on groups for information. he reads medical journal by medical people

TheGobb

Bugnug wrote: »

Pretty much the same thing. I did not know her that well. She worked with my wife. She had to quit work and my wife told her about the girl we knew, she went to the same counsellor and got the same results.

were they diagnosed with it?

kangaroo

Over 100 different members of our group have done interviews in the period when we have been trying to raise awareness.

I make no commitment to keep replying to your slurs. If people see any, but I don't respond, it doesn't mean I don't have an answer.

Bugnug

TheGobb wrote: »

were they diagnosed with it?

Yes both of them were diagnosed with ME.

TheGobb

kangaroo wrote: »

Over 100 different members of our group have done interviews in the period when we have been trying to raise awareness.

I make no commitment to keep replying to your slurs. If people see any, but I don't respond, it doesn't mean I don't have an answer.

and if you do and i do not respond it does not mean i have no more questions

. Do you accept that the other person here said ME sufferers had been diagnosed and recovered through counsellling. Do you accept they had ME?