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ME and metabolic rate
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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 it0 -
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.0
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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 atThe 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.
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!
???0 -
(I am not sure what exactly your question/point is but this will hopefully deal with it).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
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.0 -
my point /question was very clear.I asked "why do doctors look out for it now? Because you told them the symptoms???"(I am not sure what exactly your question/point is but this will hopefully deal with it).
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?0 -
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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 comments0 -
One aspect I omitted in my reply.my point /question was very clear.I asked "why do doctors look out for it now? Because you told them the symptoms???"
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.0 -
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.0 -
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 disease0 -
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.0 -
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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.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.
correct, though it often isME, 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.
That is interestingAs 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.
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 same0 -
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: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.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.0 -
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=related0 -
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. * **0 -
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/CFSThe 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?
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 themselvesThere 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 not worth a reply just to say it is not just my theoryUnless 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. * **0 -
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.0 -
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).This thread reminds me of why I dissociated from ME and other groups.
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.0 -
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 groupsThis 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.0 -
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 discussion0 -
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.0 -
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I made no comments about any specific groups since the warning. Neither did i respond directly to kangaroo as we had agreed that. I also responded to another poster. Am i not allowed to respond to another because you disagree with it. What is CFS? It is not ME that is a factI 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.0 -
look, i dont know or care what agenda any of ye have here, or what groups ye are part of or are opposed to but this thread has become seriously derailed and has turned into a farce.
please just drop it.
if ye want to debate ME/CFS with each other, please take it to PM.0 -
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).
As I am not Irish, I have no idea what these words mean, but I can guess. Knowing how you tend to write.
M.E is simply an illness; not a way of life, etc.
And trying to put guilt on others is not a constructve act.
After 40 years of it, and misdiagnosed for 30 of those years, simply I have made my own peace in my old age.
There is nothing I can do where this illness is concerned, and I saw so much stress caused by those campaigning as you do. And nothing achieved, frankly.
My own deep choice is to spend what little energy I have to help those who have nothing and less than nothing.
For we here have food, clothes, a roof over our heads, medical care, and so much else.
My day is spent almost all in bed. But, until arthritis makes more inroads than it is doing now, those hours are spent working at crafts that will sell and feed abandoned babies in India, the homeless in Dublin.
My choice, freely made, freely given
It is amazing how much we can raise in the year by this small work.
And almost no one around me knows that I have M.E. Because that is my private problem and not one I would want to impose on anyone else.
I have come to terms with the illness, with the way it is viewed'; and believe me, we are far better off here in Ireland than I was in the UK.
So, please, try to respect the decisions of others; if you want to campaign, that is fine for you.
But that way is not for everyone and we each need to respect others.
It is possible and more than possible to live a full and joyful life with M.E, and to give to the wider world while doing so.
Which to me is what matters.
I am old now and need the peace and to give all I can while I can. Small babies and homeless people need
My own life is very secluded perforce; that too is fine, and there is frankly little Western medical care can do. My own dr trusts me with the way I manage the illness and that is fine. I almost never see him as a result and that is fine too.
If you choose as we all have done at first, myself included, to exhaust yourself going the rounds of consultants; please do not criticise those who choose differently
OK; I am off now and have no intention of returning to this thread. And nor will I open any more re M.E!!
It always ends up the same, you see.
My computer time is very limited also.
OP: please be assured that some of us are gentle and friendly.
Blessings and peace.0 -
good for you not sharing each little pain in a narrcistic need for attentionWell 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).
some people see it as a way of life. They invest time in it and then do not want to admit they are wrongM.E is simply an illness; not a way of life, etc.
it is also an arogant thing to doAnd trying to put guilt on others is not a constructve act. .
most are misdiagnosed anyone who has a diagnosis of me/cfs is as there is no such illnessAfter 40 years of it, and misdiagnosed for 30 of those years, simply I have made my own peace in my old age..
nothing will be achieved because there is no discussion only dogmaThere is nothing I can do where this illness is concerned, and I saw so much stress caused by those campaigning as you do. And nothing achieved, frankly. ..
[quoteAnd almost no one around me knows that I have M.E. Because that is my private problem and not one I would want to impose on anyone else.
+1So, please, try to respect the decisions of others; if you want to campaign, that is fine for you. .
+1If you choose as we all have done at first, myself included, to exhaust yourself going the rounds of consultants; please do not criticise those who choose differently.0
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