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?

TheGobb

book about recovery

http://www.amazon.co.uk/product-reviews/1434363589/ref=dp_top_cm_cr_acr_txt?ie=UTF8&showViewpoints=1

might be of interest, they say the recovered. I have not read it

xyzjmt

The Hummingbirds Foundation for M.E. (http://www.hfme.org/) is a very informative site, which provides details of many of the symptoms of M.E. and draws a distinction between M.E. and Chronic Fatigue Syndrome which explains some of the controversies which arise in discussing these illnesses.

TheGobb

xyzjmt wrote: »

The Hummingbirds Foundation for M.E. (http://www.hfme.org/) is a very informative site, which provides details of many of the symptoms of M.E. and draws a distinction between M.E. and Chronic Fatigue Syndrome which explains some of the controversies which arise in discussing these illnesses.

It is a good site yes but the owner will not accept any psychological aspects. Someone wrote in this thread how his friend had recovered from properly diagnosed ME with counselling. Try telling that to Hummingbird. See hummimg bird's review of The State of me at
http://www.amazon.com/review/R3O8D3EAOND6UV/ref=cm_cr_pr_viewpnt
She in fact apparently diagrees with the term cfs or me/cfs as used in UK and so disagrees with the groups that hold that view. But she is not a medical person, yet she can tell how the book is incorrect in medical matters

Here is part of an email from hummingbird

---

Plan A: If you're really ill, you can instead just go to my amazon profile and
vuiew my reviews and give all my ME and CFS book reviews positive ratings, this
helps them come up in listings higher.


Plam B: Rate my reviews and list as helpful, and then write your own reviews!

---

???

kangaroo

TheGobb wrote: »

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

(I am not sure what exactly your question/point is but this will hopefully deal with it).

Doctors should look out for it because an early diagnosis gives a better diagnosis.

I satisfy all the criteria so I don't mind which criteria are sent out.

The ones we have been highlighting in recent years are the clinical criteria from the Canadian Consensus Document on ME/CFS (2003), drawn up by an international panel (under the auspices of Health Canada), who between them had seen over 20,000 ME/CFS patients at the time the document was put together.

TheGobb

kangaroo wrote: »

(I am not sure what exactly your question/point is but this will hopefully deal with it).

my point /question was very clear.I asked "why do doctors look out for it now? Because you told them the symptoms???"

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

TheGobb

Was emailed this
http://www.newscientist.com/article/mg20126997.000-when-illness-is-mostly-in-the-mind.html?full=true
You have to be a subscriber to read it all. i was sent the full version but probably cannot post here.Will PM if anyone wants it.

I do not claim it is true or completely true but there are some interesting comments

kangaroo

TheGobb wrote: »

my point /question was very clear.I asked "why do doctors look out for it now? Because you told them the symptoms???"

One aspect I omitted in my reply.

I think Irish doctors look out for it more for various reasons including:
(i) The awareness-raising we organised in the lay media, some of which they would have seen or heard directly like the rest of the population.
(ii) The two national ME groups sending information directly to them.
(iii) The indirect effects of the awareness-raising with more patients approaching them wondering if they have the diagnosis or actually having the diagnosis (having been diagnosed by somebody else); also, coming across more people who are diagnosed in their social circle. They realise it is less rare than they first thought.

You could be grateful that a doctor was aware of it when you attended with the symptoms (as you seem to look down on people who went to their doctor suggesting the possibility so presumably a doctor suggested it to you).

We are not the only people to recognised the importance of awareness-raising for the condition. The Centers for Disease Control and Prevention (CDC) (US government agency) has spent millions of dollars in recent years on a two-pronged awareness campaign aimed at (i) the general public (ii) health and medical professionals - see http://cdc.gov/cfs/mission.htm . This was partly prompted because their own research showed the low percentage of people who were diagnosed and that an earlier diagnosis improved the prognosis.

The CDC encourage(d) people with the symptoms to approach their doctors:

It’s important for people to recognize the symptoms of CFS and, if you or a loved one has those symptoms… Get informed. Get diagnosed. Get help.

sam34

the gobb and kangaroo - drop it please, both of you.

no further warnings

i dont know or care what agenda either of ye have, but take it elsewhere instead of disrupting this thread.

TheGobb

fine by me. If kangaroo does not comment on my posts, I won't on his

OP. When you say ME, Do you mean ME per se or ME/CFS. At http://www.bmj.com/cgi/eletters/340/feb11_1/c738#231605
I found an entry by LK woodruff saying that there is no ME/CFS. There is only ME as a neurological illness.. Permission is given to repost in full so here it is
____________________________________________


3/5/2010
In order for any meaningful science and progress to occur, everyone must first understand the differences, and heed them:
---->'ME/CFS' and 'CFS/ME' do not exist!!
There are many critically important differences b/n ME (G93.3) and CFS (R53.82).
Those who continue to try to 'blend' them demonstrate their illness ignorance.
Whenever anyone adds 'CFS' to ME, front or back (e.g., 'CFS/ME', 'ME/CFS') or mix the two together in any way and say or imply that they are the same thing - that immediately makes it clear that they do NOT know what true ME, G93.3, is.
The 'experts' in what has now become a real mixed-bag situation often prove not to be experts at all. Sometimes they turn out to be 'self-proclaimed' experts. Sometimes they are being well-paid to 'spin' the truth until it is unrecognizable. Sometimes they have been involved for many years - yet have never updated their thinking or resources or practices one iota in all of that time.
So one must be extremely cautious and weigh carefully whatever these 'experts' say...and verify, verify, verify every single syllable.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Here are just a few--of many--differences to consider for starters:
ME, G93.3, has been classified by the WHO under Brain, Neuro and CNS (Central Nevous System) since 1969.
-->It is most similar to MS, and polio.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
'CFS' was written (made-up) b/n 1988-1994, and remains a tiny little 'syndrome' based on 'fatigue'. It has always been classified by it's authors--the USA CDC staff--under rickettsial, vector-borne and zoonotic, along with things like Lyme, and Rocky Mt Spotted Fever, etc.
-->Think animal bites....
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
ME and CFS each also START, PRESENT and END differently.
ME, G93.3, starts with a 'sudden onset viral event' that is well- defined and which quickly morphs into a full-on multi-systemic and extremely debilitating disease for which there is no known cure.
'CFS, R53.82, comes on slowly. It cannot even be diagnosed until after 6 months, and then only when every other possibility has been crossed off the list, as it is a 'diagnosis of exclusion'.
You can read what 'CFS' is--and more importantly, is NOT-- at the USA CDC CFS gov'n web site. It isn't much:
www.cdc.gov/cfs/
~
Please also know that is has been some vested interests, like the Wessely School (WS) 'psychs' in the UK, along with some illness ignorant patients using the power of the internet and not bothering to verify FACTS or heed any SCIENCE, who have driven this growing confusion.
The WS influence started in the early 1990's when they wrote their 'psychosocial illness MODEL', which they wrote to help insurance companies deny claims, and which they referred to as 'CFS/ME'.
The UK contingent also then somehow--the details remain difficult to expose completely--managed to add 'post viral CFS' to ~their~ version of the ICD10 (only).
??? Well, CFS has always been referred to by the USA CDC as 'post infectious'. No science exists, to-date, that proves it is ever 'viral' or 'post viral'.
ME, G93.3, has long been thought to be caused by an enterovirus.
-->Not a retrovirus, which is what the latest CFS suspect--XMRV-- is.
The incubation period for ME, G93.3, is only approx 3-7 days, which effectively eliminates many 'causes' considered for 'CFS', including CMV, EBV, and XMRV, which have much longer incubation periods.
I could go on and on, but I think by now you must be catching my drift. A great deal of sloppiness has taken over and grown into an ever- expanding and mixed patient group who like to say they have 'ME/CFS' and/or 'CFS/ME'.
Well, they do not.
'ME/CFS' and 'CFS/ME' only exist in their minds.
'ME/CFS' is not formally acknowledged or classified by the WHO. It has no ICD Code.
Nor does the WS's 'CFS/ME'.
The term 'ME/CFS' became popular in N America when the 2003 ME/CFS Canadian Criteria was written. But as has been pointed out above, this 'blending' should not be taking place!
It is the WHO's (World Health Organization) job to classify all syndromes, illnesses, and diseases in the world, per their very specific and detailed review process.
It is not the job of a mixed and ever-growing group of patients, nor of any self-proclaimed 'experts', none of whom prove to have either the necessary skills or knowledge, to make up new illnesses.
-->This is what drives the confusion and perpetuates the myths.
--> Everyone needs to adhere to the science and the facts.
Those of us who actually are ME-defined (Ramsey, Hyde) are deeply distressed by these behaviours; these illogical and unscientific approaches. By this 'highjacking' of our extremely debilitating Neurogenic disease - simply to try to make theirs "sound more serious". How unscrupulous!
What is most needed now is for each and every patient to be correctly and properly diagnosed. And then each syndrome, malady, illness, disease needs to be studied separately.
Growing numbers of this mixed crowd are proving over time to actually have OTHER things wrong with them, ranging widely and including things like thyroid, cardiac, Lyme, etc.This should be a wake up call! Many of them could get their health and lives back!
Now in 2010, please keep these things well in mind. Progress will only take place if rigidly controlled scientific research takes place. In order for that to happen, the charlatans and paid vested interests and those who have been in this game a long time all need to be replaced by others who can think outside the box and who are serious about focusing on the many DIFFERENCES - as they are what will help to unravel the full etiology and pathophysiology of each illness, in time.
Continuing on in the same old way, with the same old players, all locked into the same old mindset will only perpetuate the myths and continue the old ways. They have yet to prove anything significant or substantial, in more than 26 years.
-->However, they have harmed the patients by roadblocking the answers.
All 'experts' must be crystal clear at all times and differentiate well b/n CFS (R53.82) and ME (G93.3). Or they prove they are non-experts.
Sincerely,
LK Woodruff, USA lkw777@charter.net
P.S. The WPI's XMRV study was NOT done on any ME-defined (Hyde, Ramsey) G93.3, patients.
*Permission to repost in it's entirety* Competing interests: None declared
END
_____________________________________________________
hummingbird says the same thing, that the only real ME is that defined by Melvin Ramsay and the Royal Free outbreak. It is a nuerological illnes and comes on rapidly. Other who use the ME/CFS label are not referring to the same illness. I do not say this is gospel but I would be more inclined to believe it than vague states of fatigue which could be, and often are, things like Lyme disease

premierlass

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.

Bugnug, I am not a doctor or a psychiatrist, it sounds to me as if this woman and the other you cited were both misdiagnosed. That sounds like a classic depressive disorder to me (which can have a paralysing effect), and I would be surprised that they were ever diagnosed with ME except that certain influential English and Australian psychiatrists have deliberately attempted to confound the two.

ME, the neurological and all-systems illness as defined by the WHO, is not cured by counselling because it is an organic illness. Chronic fatigue is a symptom associated with other chronic illnesses and not to be confused with ME.

As to the OP's question, from what I have been able to find it seems that metabolic screening, if that is what the doctor meant, is done through a simple blood test. http://www.hse.ie/eng/services/find_a_service/hospscancer/waterford/M_Tests.html#M9 I'm not positive, but I would guess that you would have to be referred for such a test by a consultant, so in that case you would have to get a referral in the first instance from your doctor.

TheGobb

premierlass wrote: »

I would be surprised that they were ever diagnosed with ME except that certain influential English and Australian psychiatrists have deliberately attempted to confound the two.

helped by those people and groups who use the term me/cfs and attempt to educate doctors. Luckily some doctors see through this and bin such material. There is no such condition as ME/CFS or CFS/ME. ME is a neurological condition and comes on rapidly. If it has gradual onset it is not ME. Pure ME is quite rare and some of the advocacy groups use the term me/cfs to get more numbers. There is one group where people have everything from lyme to all sorts of medical issues and yet they define themselves as having ME or CFS and use the terms as if they mean the same thing. They do not.

ME, the neurological and all-systems illness as defined by the WHO, is not cured by counselling because it is an organic illness. Chronic fatigue is a symptom associated with other chronic illnesses and not to be confused with ME.

correct, though it often is

As to the OP's question, from what I have been able to find it seems that metabolic screening, if that is what the doctor meant, is done through a simple blood test. http://www.hse.ie/eng/services/find_a_service/hospscancer/waterford/M_Tests.html#M9 I'm not positive, but I would guess that you would have to be referred for such a test by a consultant, so in that case you would have to get a referral in the first instance from your doctor.

That is interesting

OP Here is a definition of ME by one of the top experts in the world, scroll to page five

http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

I doubt if doctors in Ireland know much about ME because they will still use the term me/cfs as if the are the same

kangaroo

premierlass wrote: »

As to the OP's question, from what I have been able to find it seems that metabolic screening, if that is what the doctor meant, is done through a simple blood test. http://www.hse.ie/eng/services/find_a_service/hospscancer/waterford/M_Tests.html#M9 I'm not positive, but I would guess that you would have to be referred for such a test by a consultant, so in that case you would have to get a referral in the first instance from your doctor.

If this was part of a tour by a US clinician, it was a different test. This is how one person described what happened in Dublin:

She did a test on those there where you had to arrive fasting and move about as little as possible, before lying down for 30 minutes so you would relax, so your metabolism would be at rest for the test. Then we had to breathe through a tube connected to a machine for ten minutes, and this measured the amount of oxygen exhaled, and so, apparently, how well the metabolism worked.

I also saw this test on a BBC program about tips with regard to dieting. I think the point there was that the following day after exercising, one's metabolism is up so that one does not just burn calories at the time of doing the activity.

I do not know of any such testing facilities in Munster which is why I didn't reply to the poster's question, hoping that somebody else might reply.

TheGobb

Hummingbird on why CFS is a wastebasket diagnosis

http://www.youtube.com/watch?v=dBBl6BKBr6k

And on why ME and CFS are not the same
http://www.youtube.com/watch?v=SE8PwmLfa4Y&feature=related

_Whimsical_

TheGobb wrote: »

helped by those people and *groups who use the term me/cfs and attempt to educate doctors. Luckily some doctors see through this and bin such material. There is no such condition as ME/CFS or CFS/ME. ME is a neurological condition and comes on rapidly. If it has gradual onset it is not ME. Pure ME is quite rare and some of the advocacy groups use the term me/cfs to get more numbers. There is one group where people have everything from lyme to all sorts of medical issues and yet they define themselves as having ME or CFS and use the terms as if they mean the same thing. They do not.*
*
*correct, though it often i
*
*That is interesting
*
OP Here is a definition of ME by one of the top experts in the world, scroll to page five*
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

I doubt if doctors in Ireland know much about ME because they will still use the term*
me/cfs as if the are the same

The Gobb I was just curious as to why you believe ME/CFS support groups are so eager to swell their ranks that they're encouraging people with all sorts of health issues to wear the ME/CFS badge?

There is no financial gain for people who run these groups. There is no benefit in them using time and energy raising money for research that might yield a clinical finding to aid in diagnosis of the condition if they are purposefully obscuring the patient groups who might form part of this testing.

Unless your theory culminates in the whole support group thing being an undercover recruitment base for the free masons or a new world order army etc I really cannot imagine what the point of them wanting to increase their numbers like this is. * **

TheGobb

chilly wrote: »

The Gobb I was just curious as to why you believe ME/CFS support groups are so eager to swell their ranks that they're encouraging people with all sorts of health issues to wear the ME/CFS badge?

Because it increases their numbers and they feel the more the numbers the more notice will be taken. Why did 6,000 people march for Quinn insurance today instead of 100? why 15,000 in Clonmel re hospital last wekk instead of 2,000?. Problem is that no real research will get done that way because there are too many different ailments. Also the groups that educate the doctors , so they say, are feeding them the same false line about ME/CFS

There is no financial gain for people who run these groups. There is no benefit in them using time and energy raising money for research that might yield a clinical finding to aid in diagnosis of the condition if they are purposefully obscuring the patient groups who might form part of this testing.

that is the paradox.Higher numbers means more attention but it also makes the research more meaningless because people who do not have ME are going to be included in research. Remember there is no ME/CFS. No such condition exists. I think people should know that an dhave the knowledge to decide for themselves

Unless your theory culminates in the whole support group thing being an undercover recruitment base for the free masons or a new world order army etc I really cannot imagine what the point of them wanting to increase their numbers like this is. * **

That is not worth a reply just to say it is not just my theory

Graces7

This thread reminds me of why I dissociated from ME and other groups.

Life is too short and too precious, especially with a major illness which ME is, to spend time and limited energy on this kind of draining debate.

I hope the OP gets the info he seeks?

Off to see if I can walk the dogs a tiny bit; ie I get outside and they do the walking.

And get some fresh air into my lungs.

kangaroo

Graces7 wrote: »

This thread reminds me of why I dissociated from ME and other groups.

Well I'm grateful to people who give their time and/or money to try to improve the situation for people with M.E. rather than take a mé féin attitude (and then wonder why M.E. isn't treated as well as some medical conditions).

There are a myriad of groups around the world if people don't like the Irish ones for whatever reason.

There are of course lots of people with M.E. in the developing world so if we can move the science on we can help them too as well as Irish people.

The OP I believe may be a newish member our group. I hope he takes the opportunity to avail of facilities we have which supplement groups such as boards.ie i.e. we can E-mail out requests and/or put them in our newsletter.

TheGobb

Graces7 wrote: »

This thread reminds me of why I dissociated from ME and other groups.

Life is too short and too precious, especially with a major illness which ME is, to spend time and limited energy on this kind of draining debate.

I hope the OP gets the info he seeks?

Off to see if I can walk the dogs a tiny bit; ie I get outside and they do the walking.

And get some fresh air into my lungs.

You are right if I had it i would not be in any group, better off with the dogs and let the doctors investigate medical issues with professionals. I do hope the OP gets what he wants and got some indication of the fact there is another side than the dogma of the groups

sam34

ok, enough is enough

the gobb and kangaroo, please do not derail this thread any further with tit-for-tat comments and arguments.

take it to pm if ye want to continue the discussion

_Whimsical_

sam34 wrote: »

ok, enough is enough

the gobb and kangaroo, please do not derail this thread any further with tit-for-tat comments and arguments.

take it to pm if ye want to continue the discussion

I am not affiliated with either party here but Kangaroo has not had any part in "tit for tat comments and arguments" since your warning. His only responses since have been on the topic of the thread and in response to another poster.

Yet The Gobb has continued to make unfounded and frankly ridiculous accusations about the support group kangaroo is affiliated with and has gone unchecked.

I think kangaroo should be allowed the right to defend himself if accusations are being
made about hiM and his group. His posts have been very informative on the whole in this forum and very useful to anyone who knows someone with CFS.