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Cross Party Group on ME

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
One point that still bothers me about ME vs CFS, is that its entirely possible to have mild ME that is well managed (pacing etc) and so not have chronic fatigue. The symptom is chronic fatiguability - excessive fatigue and other symptoms after minimal activity. Without such activity, with good pacing, such fatigue might not exist.

Obviously this is not accurate for very severe patients. Just surviving is probably too high an energy demand. Between the two extremes I would expect to see some patients who are well managed who only have occasional fatigue. If at any point they push themselves, that is when the fatigue manifests.

So CFS and ME are not interchangeable. There is overlap though.Similar arguments follow from looking at other aspects of pathophysiology.

However I do not see an effective name change happening in advance of the science. If we could, today, get ME fully recognized and accurately diagnosed, the psychosomatic crowd would then say fine, its a matter of published record thatt ME is hysteria, a psychosomatic illness. So what? They wont give up their diagnosis without us really understanding the pathophysiology, and ignore contrary evidence. We also need good diagnostic biomarkers ... several of the current biomarkers are being examined to see if they are diagnostic. This includes PENE and low natural killer cell function, as well as an altered bright/dim cell ratio.

Bye, Alex
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Hi chaps,

I think you are both wrong about this and here's why. A doctor has to observe a symptom and recognise it as a neurological sign. It has to be obvious and also something that is indicative of a likely problem outside of what might already have been diagnosed.

An example of personal nature. Seizures. I had them. Still get them. These were observed. There were diagnosed as being something outside of my existing diagnosis (ME). I received (what I recall as being) an EEG. As a result I had an epilsepsy diagnosis attached. I receive specific pills for that. It has helped better manage the frequency and extent of these episodes.

My muscle twitching, was not considered something worth further testing. However, it was regarded as a symptom of my ME. I was prescribed Baclofen. It has helped. Not cure. But helped as well as helping relax my muscles generally - aiding what little sleep and relaxation I can achieve.

Here's another. Drunken wobbling about the place. This was observed clearly. At work. Was even accused of being drunk. The bastards. Accompanied by Nausea. Constant. Now this one took some time to get treated but again no specific tests were made. Eventually I saw a specialist in ME and was prescribed Betahistine Dihydrochloride. It not only fixed (largley) the nausea (thank the Gods and praise be!) but it has helped stablise what was previously always considered some labyrinthine dysfunction and indeed still might be.

How about encephalitis? Now I had that diagnosed: 'viral encephalitis'. Way back when I also had a diagnosis (or before I can't remember) of PVFS after a failed recovery from the Parvo-virus that kicked all this off for me). How was that diagnosed? I honestly do not know. There were not obvious or specific symptoms, nor were there SIGNS that I could point to. But two doctors came to the same conclusion. What was the result? Nada. There was no specific treatment recommended.

Now, take the trembling that is associated with Parkinsons. Right? Deemed to be a neurological SIGN. For a doctor who is listening to what the patient is describing (completely i.e. holistically/whatever), and observing, (because it's far more than simply having a trembling arm - e.g. one might enquire of the patient: 'Does the trembling stop when you grip a glass of water?') he might conclude - right this looks like it could be Parkinsons' Better run some further tests and refer to neurologist.

Same, for Multiple Sclerosis. Signs may well be observed represented as symptoms from the patient point of view or anomalies, strange behaviour, inability to control limbs, weakness, whatever. But the doctor has to associate them with what might be a SIGN of something deeper and refer accordingly.

Sometimes it can take a while.... Sometimes you get shit doctors.... Sometimes as a patient you don't do enough of a good job in explaining how changes are affecting you... Lots of reasons SIGNS might be missed or confused with other things, but 'ME' is not recognised as having any CLEAR NEUROLOGICAL SIGNS and more importantly perhaps - a diagnosis of 'ME' is able to be applied without further investigation and/or testing.

Why should e.g. a neurologist become involved and/or carry out further testing to confirm a diagnosis of something that can be diagnosed with the current NICE Guideline?

Because until such time as we are able to research the effectiveness of the NICE Guideline - or even compare the CCC with ICCME on the ground in real life - then what's the point for either the improved patient outcome or in terms of additional cost to the NHS?

What I mean is - anyone wishing to claim that 'ME' is somehow different to 'CFS/Whatever' is going about it the wrong way in my opine.

You need to be able to demonstrate that patients with 'ME' will have an improved outcome if they were so diagnosed and that the extra expense can be justified.

Flinging tests at the establishment who don't recognise them ain't gonna cut the mustard. They will and are able to say - so what? In what way will patients benefit? In what way can we justify the added expense?

Well that's a couple of things that say I think. But mainly you'll need to better fight for on the ground research data reporting back to a central source that undermines the existing patient outcomes from the three therapies generally recommended: activity management (Severe), CBT and GET (Moderate and Mild).

Anecdotal patient reports - the MEA Survey even whilst good - doesn't really bring home any message being shouted from the rooftops by the loudest few I am afraid.

p.s. added edit about encephalitis above

Gosh, you've been through a lot, firestormm.
Isn't it incredible, that anyone reading your case history could possibly come to the conclusion that it's all in your mind, and that a bit of CBT will sort you out! This applies to all of us, of course, but I think your excellent description of your illness is a very good example of why the medical profession is collectively mind-bogglingly ignorant, in relation to ME/CFS!
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,086
Location
australia (brisbane)
Gosh, you've been through a lot, firestormm.
Isn't it incredible, that anyone reading your case history could possible come to the conclusion that it's all in your mind, and that a bit of CBT will sort you out! This applies to all of us, of course, but I think your excellent description of your illness is a very good example of why the medical profession is collectively mind-bogglingly ignorant, in relation to ME/CFS!

It shows that when docs dont know how to treat someone they just throw them to the lions, i mean psychobabblers.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I'm not sure exactly what I said earlier, but I don't see why it is a problem that most people in the UK recognise the term ME. To clarify what I was (presumably) referring to earlier: a couple of people I know were diagnosed with "ME" before the term "CFS" was invented, every patient I have spoken to in the UK personally calls it "ME", and most significantly of all I have never met a member of the general (non-patient) public who has even heard of the term "CFS". Everybody I have ever spoken to just calls it "ME", and every patient charity in the UK has "ME" in their name. As far as I can see, it is only the Wessely school researchers who have imported the term "CFS" in their research, and are now trying to shift the balance from "ME/CFS" to "CFS/ME" and (eventually) just "CFS". The fact that they are so concerned about the name change, and many of them seem more than happy to shorten this to simply "chronic fatigue", seems to me the most telling evidence that the name does, in fact, matter.

"ME" is the historical term in the UK to describe the disease, whereas the conception and adoption of the term "CFS" is based on the belief that the disease called ME does not really exist (eg: "Is this not the Royal Free Disease and therefore questionable as a disease entity?") and that those who suffer from it merely have a syndrome of "chronic fatigue" and should be studied as part of the wider group of all patients with unexplained chronic fatigue. I use "ME/CFS" purely as a compromise to communicate with patients in the US, many of whom only know it as "CFS". In the UK, there would be no need for that compromise and I would definitely advocate the use of the term "ME", because even if it is not a perfect characterisation of the disease, it's a better characterisation than "CFS", it's the term that is most widely recognised, and it's the name used by all the charities. Until there is a better understanding of the causes and pathophysiology, it's at least as good a name as any other and I think we should stick with that.

In the UK context, the term "ME" was coined after the Royal Free outbreak and it was used then, and has been used since, to describe the illness/disease we understand when we consider criteria like the CCC and the ICC. After the Lake Tahoe outbreak, the term "CFS" was coined by people who believed that the illness of people in the outbreak was psychosomatic, and the intention and the result of that new terminology has been to study people with our illness under the umbrella of "all people with unexplained chronic fatigue". This could conceivably be justified by arguing that the details of the subsets of this wider group need to be studied in depth before discrete clinical entities like "ME" can be considered proven, and I think that is the essence of your argument, Firestormm. However, the evidence that the researchers coining and using the term "CFS" are not interested in doing that subsetting is overwhelming. Their studies do not aim to stratify or subset at all; instead, they broaden the definition to include more and more patients with chronic fatigue and then conduct studies that treat those patients as if they were a homogeneous group.They then reach conclusions and apply them to everyone with this diagnosis. This strategy can be and is used to "disprove" or cast doubt upon any findings of other researchers regarding "ME". If another group finds that 66% of people with CCC ME are completely cured by Drug X, the Oxford criteria researchers can show you that only 10% of their group are helped by it and use that as an argument to muddy the waters and slow progress, and that is how scientific progress on studying ME/CFS continues to be blocked.

Thus the most crucial points we should remember in all of this, are that broadening the definition of the waste-basket into which we are all dumped by people who do not believe we are really physically ill does not serve our interests, that in practice no attempt is being made to explore subsets of this ever-expanding definition, and that the name "chronic fatigue syndrome", by its very nature, serves to reinforce this enormously unhelpful and damaging strategy for the treatment of our illnesses. Precisely how we might best adapt strategy and respond to that is another matter - I do not think it is necessarily the best strategic option to continue to try to fight against that tide and we might perhaps do better by (for example) campaigning for studies to explore subsets of what they call "CFS" - but I do think it's important in the context of an argument such as the subject of this thread to understand the history of how and why the term "CFS" was coined, by whom, and how it has in practice made effective research conclusions impossible and changed the management of our illness for the worse for the last 25 years.

In the end, the bottom line for me is a simple, logical point. If it is accepted that the condition as defined by Oxford is a highly heterogeneous group (and Wessely and others have asserted this, as an argument as to why any research that finds a single cause must be wrong), then it logically follows that the appropriate first step towards meaningful research is to identify meaningful subsets within that broad definition. The fact that this has not been done and is not being done tells us all we need to know about the reasons for the lack of progress in the recognised understanding of our illnesses, and regardless of the arguments over the ME definition and the best name to use, that inconsistency in the approach of the Wessely School deserves to be highlighted. If they claim it is a heterogeneous definition, they should not also be asserting that conclusions from their research can and should be applied to the entire group without any attempt at subsetting. In that context, it's entirely understandable that patients who once had a clear diagnosis with a massively more restrictive criteria, which has been subsumed into a wider definition that prevents any medical progress, are arguing as they are for the retention and definition of the term "ME".

I think Mark's given a most helpful explanation of some of the reasons why the name issue is so important for many patients.
But the name issue is mixed up with so much politics and history, that I think it's something that patients will probably never all agree on.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
I'm not sure exactly what I said earlier, but I don't see why it is a problem that most people in the UK recognise the term ME. To clarify what I was (presumably) referring to earlier: a couple of people I know were diagnosed with "ME" before the term "CFS" was invented, every patient I have spoken to in the UK personally calls it "ME", and most significantly of all I have never met a member of the general (non-patient) public who has even heard of the term "CFS". Everybody I have ever spoken to just calls it "ME", and every patient charity in the UK has "ME" in their name. As far as I can see, it is only the Wessely school researchers who have imported the term "CFS" in their research, and are now trying to shift the balance from "ME/CFS" to "CFS/ME" and (eventually) just "CFS". The fact that they are so concerned about the name change, and many of them seem more than happy to shorten this to simply "chronic fatigue", seems to me the most telling evidence that the name does, in fact, matter.

"ME" is the historical term in the UK to describe the disease, whereas the conception and adoption of the term "CFS" is based on the belief that the disease called ME does not really exist (eg: "Is this not the Royal Free Disease and therefore questionable as a disease entity?") and that those who suffer from it merely have a syndrome of "chronic fatigue" and should be studied as part of the wider group of all patients with unexplained chronic fatigue. I use "ME/CFS" purely as a compromise to communicate with patients in the US, many of whom only know it as "CFS". In the UK, there would be no need for that compromise and I would definitely advocate the use of the term "ME", because even if it is not a perfect characterisation of the disease, it's a better characterisation than "CFS", it's the term that is most widely recognised, and it's the name used by all the charities. Until there is a better understanding of the causes and pathophysiology, it's at least as good a name as any other and I think we should stick with that.

In the UK context, the term "ME" was coined after the Royal Free outbreak and it was used then, and has been used since, to describe the illness/disease we understand when we consider criteria like the CCC and the ICC. After the Lake Tahoe outbreak, the term "CFS" was coined by people who believed that the illness of people in the outbreak was psychosomatic, and the intention and the result of that new terminology has been to study people with our illness under the umbrella of "all people with unexplained chronic fatigue". This could conceivably be justified by arguing that the details of the subsets of this wider group need to be studied in depth before discrete clinical entities like "ME" can be considered proven, and I think that is the essence of your argument, Firestormm. However, the evidence that the researchers coining and using the term "CFS" are not interested in doing that subsetting is overwhelming. Their studies do not aim to stratify or subset at all; instead, they broaden the definition to include more and more patients with chronic fatigue and then conduct studies that treat those patients as if they were a homogeneous group.They then reach conclusions and apply them to everyone with this diagnosis. This strategy can be and is used to "disprove" or cast doubt upon any findings of other researchers regarding "ME". If another group finds that 66% of people with CCC ME are completely cured by Drug X, the Oxford criteria researchers can show you that only 10% of their group are helped by it and use that as an argument to muddy the waters and slow progress, and that is how scientific progress on studying ME/CFS continues to be blocked.

Thus the most crucial points we should remember in all of this, are that broadening the definition of the waste-basket into which we are all dumped by people who do not believe we are really physically ill does not serve our interests, that in practice no attempt is being made to explore subsets of this ever-expanding definition, and that the name "chronic fatigue syndrome", by its very nature, serves to reinforce this enormously unhelpful and damaging strategy for the treatment of our illnesses. Precisely how we might best adapt strategy and respond to that is another matter - I do not think it is necessarily the best strategic option to continue to try to fight against that tide and we might perhaps do better by (for example) campaigning for studies to explore subsets of what they call "CFS" - but I do think it's important in the context of an argument such as the subject of this thread to understand the history of how and why the term "CFS" was coined, by whom, and how it has in practice made effective research conclusions impossible and changed the management of our illness for the worse for the last 25 years.

In the end, the bottom line for me is a simple, logical point. If it is accepted that the condition as defined by Oxford is a highly heterogeneous group (and Wessely and others have asserted this, as an argument as to why any research that finds a single cause must be wrong), then it logically follows that the appropriate first step towards meaningful research is to identify meaningful subsets within that broad definition. The fact that this has not been done and is not being done tells us all we need to know about the reasons for the lack of progress in the recognised understanding of our illnesses, and regardless of the arguments over the ME definition and the best name to use, that inconsistency in the approach of the Wessely School deserves to be highlighted. If they claim it is a heterogeneous definition, they should not also be asserting that conclusions from their research can and should be applied to the entire group without any attempt at subsetting. In that context, it's entirely understandable that patients who once had a clear diagnosis with a massively more restrictive criteria, which has been subsumed into a wider definition that prevents any medical progress, are arguing as they are for the retention and definition of the term "ME".

The 'problem' I referred to Mark is one of the objectivity of that diagnosis. I too was diagnosed with ME prior to the adoption of the label CFS by some doctors and the 'establishment'. What does the diagnosis of ME mean?

I grew up if you like only recognising 'ME'. The first book I was bought on the subject was from Charles Shepherd. All it spoke of was 'ME'. Does this history make my initial diagnosis using that term mean I have something more valid? No. Of course not.

If you pop along to a doctor now, or even then, and you see even a specialist who uses the label ME and even jots this down on your notes - so what? What difference does it make and how will this effect the situation should e.g. the unlikely occur and ICCME is adopted?

Would all those like me previously diagnosed - or all those currently diagnosed - by a doctor using the label 'ME' be any safer in their diagnosis? If everyone is now being confirmed as having 'ME or CFS' by reference to NICE in a clinical setting - does that make their diagnosis any less relevant to those like me who came before?

Because my diagnosis previously, and since, on occasion has come from e.g. an immunologist conversant with 'ME' - does that make my diagnosis safer, more valid? Does it rely totally on the experience of the specialist himself?

What of those doctors I have seen over the years who noted 'CFS' on my notes because they were perfectly able to use that term should they wish to do so? Or those few who have noted 'encephalopathy'?

This is what I mean by a 'problem'. Even when objective testing is introduced based on biomarkers for some aspect of the reported symptoms - will this lead to everyone being re-diagnosed? I doubt it very much.

If a treatment is produced based on e.g. a muscle/lactic acid test, then people might be tested and treated accordingly with a dose dependent on the test result - but for the whole condition? No.

I simply cannot see how they will be able - practically - to re-appraise everyone and they aren't going to bother when all we have a competing criteria that lead to no quantifiable treatment improvements or better quality of life for patients.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Hi Firestormm, its not enough that a doctor can observe a symptom, they must also recognize its importance for it to be a recognized sign - which is more or less what you stated, but its about mechanisms. A sign has to be associated with known mechanisms so far as I can see. In the case of muscle twitching, yes its a sign - probably a neurological sign, but it doesn't have to be. It could be metabolic. In the case of stumbling about as though drunk, thats an observable symptom. It could be anything ... including play acting. Thats how many docs would view it unless they made further tests.

Reflex tests (usually normal) and Rhomberg tests (may not be normal) can be done easily in a clinic, as can pupilary dilation testing (which can show light sensitivity). Blood pressure crashes can also be observed if they just bother to do the testing right. Its just that the most useful tests for ME cannot be done in a clinic.

Maybe one of the doctors on this forum could comment?

Regarding non-acceptance of tests, I agree, but that wasn't the question I was addressing. In the UK so many tests are ignored even though they WOULD assist the patient. To claim otherwise on many tests is simply false: its spin for bureaucratic purposes. Lets save money at the patient's expense.

One of the main outcomes of this is to avoid having to recognize disability and therefore grant state benefits. Doctors have an obligation to effectively diagnose, not just treat. In addition with a nearly 50% misdiagnosis rate in the UK I would think that alone was grounds for more testing. Tilt table testing and mitochondrial function testing are two tests that should be used. Tilt table testing has been extensively researched and may indicate autonomic dysfunction. Mitochondrial function testing is new and not really replicated in published science, but neurons are very vulnerable to low energy production.

Such tests will usually be negative for Oxford "CFS" patients, so its a justifiable (but misleading) claim to say its not cost effective. For ME patients however such tests routinely show major problems, so if ME were accepted these costs would be justified.

The 50% misdiagnosis rate is compounded by the non-attendance of the very severe patients. Many "CFS" doctors do not even see severe patients, and are generally unaware of their existence. This biases their viewpoints.

Doctors not recognizing signs does not mean they are not there. It only means the doctor failed to find them, or is unaware of the science. How are spinal lesions, brain lesions, or heart lesions not signs? They are objectively verifiable pathophysiology that can underlie patient symptoms You can argue about the significance, or the justification for testing, but those are different questions.

One of the most clinically useful and frequently associated signs is not neurological - its post exertional energy crash following exercise. This can be verified by the Stevens protocol, and is objective. I think most Oxford "CFS" patients would not show problems here, though that has yet to be confirmed scientifically, but most ME patients would. This test is however expensive and time consuming, and cannot be used on very severe patients (and probably many severe patients). The crash is a symptom. It becomes a sign when it can be objectively verified.

Similarly a substantive reduction in heart ejection fraction is closely associated with ME. I doubt it would be associated with Oxford "CFS".

I wonder how much of this is pointless semantic argument though? I doubt much of this matters to the NHS and NICE. They manage medicine, they don't treat it as science.

The major reason for the use of ME definitions though is not clinical, its research based. The "Oxford" definition is the worst possible choice for a research definition.

On a separate issue I don't think ME as a distinct disease entity has been proven. Further, I think the diagnosis will disappear once the science has objective and accurate diagnostic biomarkers and we better understand the pathophysiology. Any label in use is a temporary one.

Bye, Alex

Alex, I'm in need of a return to my bed. Wikipedia is actually rather good in demonstrating some signs and how they might be represented by observed behaviour/symptoms. Not all such observations relate to a neurological cause - this is obvious - but we were talking about ME and what might be construed by a patient as a neurological SIGN relating to their primary diagnosis specifially.

An extract:

Frontal lobe signs

Frontal lobe signs usually involve the motor system, and may include many special types of deficit, depending on which part of the frontal lobe is affected:
  • unsteadiness in walking
  • muscular rigidity, resistance to passive movements of the limbs (hypertonia)
  • paralysis of a limb (monoparesis) or a larger area on one side of the body (hemiparesis)
  • paralysis head and eye movements
  • inability to express oneself linguistically, described as an expressive aphasia (Broca's aphasia)
  • focal seizures which can spread to adjacent areas (Jacksonian seizure)
  • grand mal or tonic-clonic seizures
  • changes in personality such as disinhibition, inappropriate jocularity, rage without provocation; or loss of initiative and concern, apathy, akinetic mutism, general retardation
  • "frontal release" signs, i.e. reappearance of primitive reflexes such as the snout reflex, the grasp reflex, and the palmar-mental reflex
  • unilateral loss of smell (anosmia)
Parietal lobe signs

Parietal lobe signs usually involve somatic sensation, and may include:
  • impairment of tactile sensation
  • impairment of proprioception, i.e. postural sensation and sensation of passive movement
  • sensory and visual neglect syndromes, i.e. inability to pay attention to things in certain parts of the person's sensory or spatial environment. This can be as extreme as denial of a limb.
  • loss of ability to read, write or calculate (dyslexia, dysgraphia, dyscalculia)
  • loss of ability to find a defined place (geographical agnosia)
  • loss of ability to identify objects based on touch (astereognosia.)
http://en.wikipedia.org/wiki/Focal_neurologic_signs

I think that - as it has also happened to me - 'we' tend to feel that because a referral to a neurologist is not always (ever) forthcoming when we are experiencing symptoms that we feel might (or are) associated with a screwed noggin or nervous system - that our condition, our suffering is not being taken seriously.

In the past 15 years this has certainly on occasion been something I have felt and it really did get me down. That does not (cannot) equate to 'ME' having distinct neurological SIGNS however. Kindly indicate what SIGNS you associate with ME. Thanks.

Will try and get back later.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The 'problem' I referred to Mark is one of the objectivity of that diagnosis. I too was diagnosed with ME prior to the adoption of the label CFS by some doctors and the 'establishment'. What does the diagnosis of ME mean?

I grew up if you like only recognising 'ME'. The first book I was bought on the subject was from Charles Shepherd. All it spoke of was 'ME'. Does this history make my initial diagnosis using that term mean I have something more valid? No. Of course not.

If you pop along to a doctor now, or even then, and you see even a specialist who uses the label ME and even jots this down on your notes - so what? What difference does it make and how will this effect the situation should e.g. the unlikely occur and ICCME is adopted?

Would all those like me previously diagnosed - or all those currently diagnosed - by a doctor using the label 'ME' be any safer in their diagnosis? If everyone is now being confirmed as having 'ME or CFS' by reference to NICE in a clinical setting - does that make their diagnosis any less relevant to those like me who came before?

Because my diagnosis previously, and since, on occasion has come from e.g. an immunologist conversant with 'ME' - does that make my diagnosis safer, more valid? Does it rely totally on the experience of the specialist himself?

What of those doctors I have seen over the years who noted 'CFS' on my notes because they were perfectly able to use that term should they wish to do so? Or those few who have noted 'encephalopathy'?

This is what I mean by a 'problem'. Even when objective testing is introduced based on biomarkers for some aspect of the reported symptoms - will this lead to everyone being re-diagnosed? I doubt it very much.

If a treatment is produced based on e.g. a muscle/lactic acid test, then people might be tested and treated accordingly with a dose dependent on the test result - but for the whole condition? No.

I simply cannot see how they will be able - practically - to re-appraise everyone and they aren't going to bother when all we have a competing criteria that lead to no quantifiable treatment improvements or better quality of life for patients.

I do agree with some of the points that you've made in this thread, Firestormm, and I think I understand your perspective.
The whole field of 'CFS' and 'ME' is muddled and it maybe very difficult to separate the two, in practical terms.

But I do think that very good attempts have been made to define an illness called 'ME' ('ME' has been defined in various ways.)
I personally define 'ME' very loosely, with PEM, or PENE, as the only necessary defining feature. (But I know that many wouldn't agree with me about that.)
And we all recognise that there are many various symptoms that people experience in addition to PEM.

I agree with you that some 'CFS' definitions can define 'CFS' in a very similar way to 'ME', and can be quite selective, so they might only select neurological or immunological CFS/ME patients.
I also agree that patients defined by an 'ME' criteria might not all have the same discrete disease.
Or that a vast majority of 'CFS' patients may well have a very similar disease.
I agree that it's impossible to know exactly what we all suffer from, given the current state of research, and the lack of powerful epidemiological studies.

But, the problem that I personally have with the term 'CFS', is that it has been used as an all-inclusive, catch-all, term. For this reason, and all the reasons that Mark explained, the term 'CFS' is unhelpful.
'CFS' doesn't describe an illness, and it isn't supposed to.
Whereas, 'ME' is at least an attempt to define a discrete illness.

So, the two terms have different uses, or at least, they had different uses before they were muddled together.
'ME' descriptions have always been based on observations of a closely related cohort of patients. Or that was the intention.
This is the case for the ICC, and the CCC, as well.
The descriptions are not just plucked out of the air.
They are an attempt to describe and define an illness, or a pattern of symptoms, experienced by patients who have very similar illness experiences.
Maybe the same could be said of some 'CFS' criteria, but the loosest CFS criteria only require 'fatigue' as a symptom, and so this does not attempt to define patients with a closely related pattern of symptoms.

So, I agree that it's all a muddle, but there are many reasons that many patients relate to the term 'ME', or prefer the term 'ME'. (Mark has explained some of the reasons.)
But also, those patients who relate to the CCC/ICC (i.e. they read the diagnostic criteria, and recognise their own illness as being carefully and accurately described) will often prefer these diagnostic criteria, because they are obviously more appropriate for them, if they describe their illness accurately.

Anyone who relates to descriptions of 'ME', such as the ICC, will say to themselves "aha, that's exactly what I've got, and I want it investigated, and researched". But if research is carried out on 'CFS', then anyone who is convinced that they've got 'ME', just sees funds being wasted, and resources being drained into pointless and fruitless exercises.

So, it's complex and muddled, but many patients see their illness being described accurately in some of the more specific 'ME' diagnostic criteria, which are based on observations of patients with very similar patterns of symptoms.

For me, it's crucial that research funding goes into well defined cohorts.
I'm happy for any well-defined cohorts to be investigated, however they are defined.
The various 'ME' criteria are one way to try to define a selective cohort, so it seems very sensible to research these cohorts, at least alongside 'CFS' cohorts, or other cohorts.

I'm sympathetic for the clinical use of the term 'ME', but also sympathetic to all the objections. I can relate to both sides of the argument.
I'm sympathetic for using 'ME' in a clinical sense, simply because I think it helps move the arguments forwards, re biomedical/psychological models, and could lead to more appropriate research being carried out. But I wouldn't necessarily want a very selective criteria used exclusively in a clinical setting. An inclusive 'ME' diagnostic criteria could be used, or more than one ME/CFS diagnostic criteria could be used alongside each other, and the results could be used for epidemiological research. Why use just one diagnostic criteria?
Personally, in a clinical setting, I would want 'ME' to include all 'CFS' patients who experience PEM. So it would be very inclusive. Or more than one criteria could be used.
I personally think this would be helpful, but I understand the arguments against it.

I don't think that CFS and ME patients should be separated. I think nearly all of us have an immunological illness. Many of us have had fluctuating levels and types of symptoms, from being severely affected to being mildly affected. So many of us could have been diagnosed with 'ME' at some point during our illness, but might only get a 'CFS' diagnosis later in our illness, or vica versa.

But I do agree with you that we'd be kidding ourselves, if we thought that the use of the term 'ME' would automatically change everything for the better overnight. That's partly why I usually say that the name issue is a bit of a distraction.

But I do think we need to push for the recognition of subsets. I think this is crucial for all of us.
Even if we can't accurately define subsets at this stage, I think that the recognition or acknowledgement that subsets exist would be a massive step forwards.
It would mean that researchers could start attempting to define subsets, and could more easily research any subsets that they thought appropriate.
(Mark explained why it's important to research subsets, and there are many reasons why it's crucial.)

Jonathan Kerr had his research funding turned down I think partly because he was attempting to define subsets. I can't quite remember, but he might have been recruiting patients using a more selective criteria than the NICE definition. I can't remember all the details now, but this sort of behaviour by MRC funding panels is unacceptable, and is partly made possible because of the loose 'CFS' (fatigue) criteria that are in use.

It's such a complex issue, and I don't think there are any black and white or simplistic answers.
 

Ember

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In that context, it's entirely understandable that patients who once had a clear diagnosis with a massively more restrictive criteria, which has been subsumed into a wider definition that prevents any medical progress, are arguing as they are for the retention and definition of the term "ME".
Happily, these patients aren't alone:
An International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50 000 patients with ME, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi-type process (http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract).
 

Firestormm

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If someone pops to a doctor and receives a diagnosis, how often does the patient ask or the doctor reveal what 'criteria' they are using to arrive at said diagnosis?

There is great confusion caused by all these various criteria when from a patient's point of view all that matters is what their doctor records as the diagnosis and more specifically that they get the diagnosis correct AND THE TREATMENT!!

On forums and the like those of us that are able, talk about various criteria (more often than not research criteria) as if our diagnosis, made by a doctor, is based on said criteria.

Largely, 'we' are self-diagnosing based on the criteria that is en vogue. A diagnosis, a clinical diagnosis, is made perhaps with reference to a criteria, but I would argue that it rests largely on the expertise of the diagnosing clinician.

A person who will use various resources - including experience, listening, assessment - to narrow down and discard the possibilities to arrive at what is most likely to be 'wrong'.

For those - like me I suppose - who are able to say "Well my doctor diagnosed 'ME' not 'CFS'" I think it is rather unfair to then besmirch those who have 'only' received a 'CFS' diagnosis. Even if you restrict this to those of us in the UK and don't extend it across the Atlantic.

I often think about the number of times in my life I have received a diagnosis of 'viral infection'. Very very rarely, has the diagnosis been more specific than that. Maybe as patients, maybe as doctors, and 'modern medicine', a more succinct and specific diagnosis should be sought. Maybe such a thing is possible these days - but what would be the point, when the numbers game indicates that for the vast majority, a prescription of 'rest' and 'fluids' and 'vitamin C' would suffice to get the patient back to work or back to the 'former selves'.

Until such time as a 'test' (unlikely) for 'ME' is forthcoming, or 'tests' (more likely), for elements of the key symptoms and likely contributory causes; is/are produced, 'we' rely totally on the physician to write his diagnosis on a bit of paper. We don't know what he is really basing his decision on, we might get referred to a specialist (someone with more specialist experience and knowledge) for a second opinion, but by and large, and at this time, it matters not one iota in terms of treatment options or likely patient outcome - if those recorded acronyms amount to M.E. or C.F.S.

Any 'debate' among the more able patients who are engaged with the internet and elsewhere as to who 'meets' any one criteria of choice based on subjective symptomology, is - I would argue - pointless and self-destructive. Personally, I am rather sick and tired of the argument against those who happen to have 'C.F.S.' recorded on their records - not that they ever seem to reveal themselves of course.

No. This whole 'C.F.S.' ain't 'M.E.' tirade is doing more harm than good and distracting 'us' from the more important fights. Witness the CPG debacle. Going along with the 'here and now' the 'ME or CFS' collective - doesn't dilute anyone's argument and it shouldn't make anyone feel overlooked.

If the argument is based on - as I believe - this notion that ME/CFS include 'all fatiguing conditions' and a greater proportion of patients whose 'cause' is largely psychological - it's a nonsense. One of the fights should be to ensure that diagnosing physicians adopt the prevalent 'best practice' and to ensure ALL diagnoses meet e.g. in England and Wales, the NICE Guideline.

That appropriately trained, experienced, and available, specialist medical practitioners are able to see ALL patients with a diagnosis - for a second referral - to DOUBLE ensure that these patients have not been misdiagnosed.

Of course misdiagnosis based on the current state of play is largely subjective also, but we need to ensure in so far as is possible that every opportunity is given for patients to be treated. NOBODY wants a patient to be diagnosed with a condition like 'ME' (my personal preference based on a dislike of the name CFS), or any other long-term chronic condition with no actual treatment. No-one!

Anyway.... Picked up a cold from those wonderful kids so need to retire again. Take care.

Firey by name and Firey by nature. Not. :)
 

ukxmrv

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(Siobhan was deputy convenor of the XPG)

Published on 4 November 2012

Paul Hutcheon

SCOTTISH Labour leader Johann Lamont, below, has removed an ally described by colleagues as "aggressive and abrupt" from a post liasing with MSPs and civic Scotland.

Siobhan McMahon has been shifted from the coveted role of parliamentary private secretary after less than a year in the job.

The Central Scotland MSP's formal job description was linked to "external engagement", but in reality she was seen to be the leader's eyes and ears in the party.

She also chaired shadow Cabinet meetings. However, several Labour sources, speaking on condition of anonymity, said McMahon's uncompromising style had not got down well with colleagues.

One said: "She was far too aggressive and abrupt. I don't think she was temperamentally suited to the role."

Another source said: "She was never slow to express an opinion."

In September, a Glasgow-based sex worker accused McMahon of making her cry at a policy meeting in the Parliament.

She wrote on her blog: "I literally can't remember the last time someone spoke to me with such aggression."

The sex worker added: "So then I cried, through a mixture of shock, fury, and, well, sadness I guess."

McMahon stopped being PPS last month and will instead take up a position "engaging" with young people. Her father, Michael, is also a Labour MSP.

He backed Ken Macintosh for the Labour leadership last year, while his daughter supported Lamont.

A Scottish Labour spokesman said: "Siobhan McMahon has been tasked with engaging with young people within the party membership and beyond. This is an important role in Johann Lamont's attempt to rebuild Scottish Labour."
Related articles
 

ukxmrv

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Susan Webster leaves Action for M.E.
Susan Webster, our Project Co-ordinator for Scotland, left Action for M.E. at the end of October to take up the post of Head of Policy and Campaigns with MND Scotland (Motor Neurone Disease).
 

alex3619

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Julius Caesar, meet Tower of Babel ... or is that Babble?

Divide et impera = Divide and Conquer

In a situation where every definition and interpretation has different strengths and weaknesses, and where the use of terms is so variable that in one context a term like CFS can mean one thing, and in another it means something else, it is not surprising that the community is fractured on this issue.

There is no way out of this mess using either CFS or ME as terms by themselves. First, we need a definitive biomarker. Then we need a definitive diagnosis which will probably have a new name. There may be many such diagnoses in time, each with their own names. That is when the name controversy will end. It is science that will resolve this issue, and science is proceeding way too slowly for comfort.

In dealing with naming we need to be clear that we are talking politics. Good scientists will automatically allow for subgrouping and use well defined patient cohorts as the science and budge allows. Poor scientists wont, but in the end their research will be relegated to the very large trashpile of science. So the pressing issue is political, including political interference in the scientific process, and political bias toward funding.

Politics has only a little to do with reason, evidence or science. Its about ideologies, agendas, power, pursuasion and rhetoric.

I strongly suspect we will never get anywhere with the name debate until we accept this is primarily about politics. Its a political game, and for some it means wealth, influence and accolade, but for others it means poverty, illness and suffering. These are high stakes for us.

Bye, Alex
 

Firestormm

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I strongly suspect we will never get anywhere with the name debate until we accept this is primarily about politics. Its a political game, and for some it means wealth, influence and accolade, but for others it means poverty, illness and suffering. These are high stakes for us.

Bye, Alex

No. Not politics but lack of proof Alex. There is no proof to substantiate any of the names and therefore no hope of an aetiology to back up any of the names. Without a strong enough case you cannot hope to 'win' your argument. What has always been missing is proof - pathological proof - and of a nature and size that swings any argument.

There is no guarantee that any name thus far advanced is the 'right' one because of this lack of proof. Nothing to say that something might emerge that for example, reveals an abnormality wholly unconnected to the 'neurological' entry in WHO (as it was based anyway on "outbreaks").

And should such evidence ever emerge who would be willing to surrender these historic connections to assumed validity? How much has that inertia got to do with things? Is that 'politics' too?

In a sense - a strong sense - the arguments advanced leading up to the NICE Guideline were strong enough to see NICE acknowledge the pre-existing and a new (encephalopathy) nomen. The three names acknowledged are assumed to be related (encephalomyelitis, encephalopathy, and chronic fatigue syndrome).

Until clear evidence emerges that either supports or dispels either or none of these names and their associated definitions - it isn't politics that is leading to controversy and frustration and this unrelenting 'holding pattern'. It is an unwillingness in some quarters to acknowledge this lack of proof.
 

alex3619

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Hi Firestormm, on this point we are in agreement. That is why I mentioned biomarkers. To finish this debate requires definitive biomedical advances. My point is that in the absence of such advances politics is the primary driving force, especially in the UK medical establishment. We have no way of knowing when the science to define and understand ME and related illnesses will be complete. Until it is politics will be a big issue. The establishment does not accept the evidence. That is not a scientific choice, its a political one. Even the choice of who gets nominated to investigate things in organizations like NICE is political. Bye, Alex
 

Firestormm

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Hi Firestormm, on this point we are in agreement. That is why I mentioned biomarkers. To finish this debate requires definitive biomedical advances. My point is that in the absence of such advances politics is the primary driving force, especially in the UK medical establishment. We have no way of knowing when the science to define and understand ME and related illnesses will be complete. Until it is politics will be a big issue. The establishment does not accept the evidence. That is not a scientific choice, its a political one. Even the choice of who gets nominated to investigate things in organizations like NICE is political. Bye, Alex

Agreed. Although as I am not a part of the medical establishment - merely an interested observer - I think there is more 'politics' in the patient 'community' than there is in the establishment.

Call me naive. I don't mind. I happen to think that more people should admit to being naive than claiming to know the inside story. More questions. Less assumptions. Might lead to less 'pollution' generally.
 

Firestormm

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This was flagged on the other wee forum the other day. A petition to the European Parliament from the European ME Alliance (EMEA). I think it is relevant to the topic of discussion - namely nomenclature (well you know what I mean) - but here they are calling for 'recognition' (my word) and equal treatment for both CFS and ME as a neurological disease across member states:

http://www.euro-me.org/news-Q42012-001.htm

October 2012

Dear Members of the European Parliament,

The European ME Alliance (EMEA) is a grouping of European organisations that are involved in supporting patients suffering from myalgic encephalomyelitis (ME) - (in some countries ME is embraced in the term ME/CFS or even CFS) and the Alliance campaigns for a strategy of biomedical research into ME in order to provide treatments and cures for this neurological disease.

The Alliance consists of member organisations from Belgium, Germany, Holland, Ireland, Italy, Norway, Spain, Sweden, Switzerland, Denmark and UK.

The representatives of the European ME Alliance wish to ask for your support of the attached petition.
The petition seeks to ensure that member states of the EU abide by, enforce and respect the following: -
  • that myalgic encephalomyelitis is treated as a neurological disease
  • the medical and civil rights of people suffering from ME are respected
  • the most recent criteria for diagnosis of ME are used by member states
  • biomedical research on ME is fostered and funded by the EU
  • discrimination against people with ME is stopped
EMEA Belgium will represent the Alliance in any discussions with the EU that are held in Brussels.

We hope we can count on your support for this petition.

Yours Sincerely,

The Chairman, Board and Members of the European ME Alliance

European ME Alliance
www.europeanmealliance.org

Belgium
ME/CFS Association
Denmark Dansk ME Forening
Ireland Irish ME Trust
Italy
Associazione Malati di CFS
Germany Fatigatio e.V.
Netherlands Het Alternatief
Norway Norges M.E. Forening
Spain Liga SFC
Sweden Riksföreningen för ME-patienter
Switzerland Verein CFS Schweiz
UK
Invest in ME

Unfortunately, this is potentially as restrictive as previous efforts, don't you think? It's a hard one I admit. But pending definitive (or even partial consensus) research that confirms an aetiology for encephalomyelitis over anything else proposed or something more relevant - use of the term and definition arising - is to me at least restrictive and potentially wrong.

Apparently the request, in part, is beyond the authority of the EU. Shame. Rather dilutes the effort somewhat. Still it does raise awareness I suppose.

Part of the reply received from one MEP:

....As you may be aware, the EU does not have direct influence over individual member states' healthcare. The Committee for Environment, Public Health and Food safety (ENVI), which has most relevance to your letter, only has the mandate to propose European solutions to health related problems. Furthermore, these are in the field of public health more generally.

Therefore the EU would not have the power to 'ensure that the Member States implement this in their Health Care System' as the petition requests....

http://peoplewithme.com/thread-1829.html
 

Bob

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No. Not politics but lack of proof Alex. There is no proof to substantiate any of the names and therefore no hope of an aetiology to back up any of the names. Without a strong enough case you cannot hope to 'win' your argument. What has always been missing is proof - pathological proof - and of a nature and size that swings any argument.

I fundamentally disagree with you, Firestormm, except to say that we always need more and better evidence.

In the old days of medicine, before we had sophisticated medical knowledge and technology, it's interesting to understand how we would define the nature of a disease. They would observe the patients closely, and they would make careful notes about the signs and symptoms. If there were a number of patients with the same signs and symptoms, then they could lump them together, and give a name to the condition. Then they could look for treatments that worked for that particular patient group. If one treatment worked for one patient, then it would be worth trying on the other patients in that group to see if it would work as a general treatment. It's basic medicine.

Actually, this is still the basis of medicine today, and it is pretty much what has happened with the ICC. A number of physicians and researchers have come together, to try to define a group of patients who have very similar symptoms, the best they can with the available evidence.

So I don't agree that there is no evidence. The evidence is the observation of patients. We need more evidence, obviously, but without better evidence, then this is a good way to proceed, in terms of understanding groups of patients better. The name issue is irrelevant to this process.

Name issues apart, the ICC can at least be used alongside other (CFS/ME) diagnostic criteria in research. I would argue that it is in fact essential to do so, if we are to move the field forwards, and learn more. At least there is the chance that the ICC defines a group of patients with the same, or similar, disease.

The loosest interpretation of the NICE guidelines, and the Oxford criteria, diagnose patients who experience fatigue only. That's absolutely no use at all, in terms of trying to understand the nature of an illness, because it probably lumps a wider spectrum of patients together, including (as Wessely and Sharpe acknowledge - see below for details) anxiety and depression patients etc. These two criteria (NICE & Oxford) make absolutely no attempt to try to define a group of similar patients, beyond experiencing 'fatigue'. These are useless definitions, in terms of treatment and research. ("You feel tired or exhausted? OK, you've got CFS." It's a pathetic and sorry excuse for medicine.)

We do have evidence of biomarkers (e.g. the tilt table test), although I agree that there is always room for stronger and better evidence. It could also be argued that post-exertional malaise is a biomarker.


Last night, I was reading a paper by Simon Wessely and Michael Sharpe (2005), and I was quite shocked to see that they equated CFS exactly with an anxiety disorder. They said that the symptoms of CFS and anxiety are exactly the same, and that a patient could equally be diagnosed with CFS or anxiety.

They are wilfully ignoring the wide body of available evidence. They are also ignoring their patients, unless they only see psychological patients (which is highly unlikely). Either way, they are conflating a wide spectrum of illnesses. This is unhelpful and ignorant at best. It's appalling science. If they want to treat psychological patients, then that's fine, but then they should carefully distinguish their cohort, and not hijack the 'CFS' name and the CFS/ME categorisation. CFS is an internationally recognised condition and it's not the same as 'chronic fatigue' or anxiety disorders. 'Chronic fatigue' and 'anxiety' have nothing to do with CFS, so why try to conflate all three? Why say that ME patients need cognitive behavioural treatments? Why say that the PACE Trial found that CBT/GET treated "60%" of CFS patients, when it was in fact 13%, at the very best (using their own data and questionable methodology), or 'clinically ineffective' using objective measures, or deterioration at worst? Why say that CBT/GET are the only and best treatments, and assert that the PACE Trial is evidence of a cognitive/behavioural disorder, when the evidence strongly demonstrates the opposite?

This is why CFS/ME has become a political issue. These people are using their considerable influence to wreck CFS research, wreck the lives of patients, and to shape policy according to their own desires.

It's not a lack of evidence that is the problem, but the wilful ignoring and disregard of evidence (however strong or weak), by vested interests, and their monopoly on decision-making, that's the problem.
 

Firestormm

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I thought this was perhaps pertinent to the topic under discussion on this thread:

Full report, which I must say is commendably thorough: http://www.meassociation.org.uk/?p=13541

ME Question Time Shrewsbury October 6th 2012

Question 7
The questioner’s doctor refused to use the term ME and she wanted to know about the difference between ME and CFS as ME is so much more than just fatigue.

Dr Charles Shepherd [CS] gave his view that CFS is as inappropriate for ME as calling Alzheimer’s disease “Chronic Forgetfulness Syndrome.”

CS gave the history of the change in the 1980s to include ME along with disparate other illnesses in the umbrella term of CFS.

There was conflict over the “Encephalomyelitis” part as it was argued that not everyone deemed to have ME actually had inflammation of the brain and spine with some psychiatrists even trying to persuade us that the illness was psychological. Doctors tend to prefer CFS and patients ME.

Dr Nigel Speight [NS] recommended quoting the CMO’s report in 2002 to doctors where he said that it was reasonable to use the two terms together as ME/CFS.

Jane Colby [JS] said that you have a practical term and sometimes you have to quote documents where CFS is used. She then read out from the 2011 International Consensus Criteria, which she pointed out was formulated by professors, virologists and medical professionals in other countries:
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3.)​
She went to say that the term “ME” is still being used and should be preserved and that there is discussion of sub-groups in CFS… However, she further quoted from the 2011 International Consensus Criteria:

No other fatiguing disease has ‘chronic fatigue’ attached to its name – e.g. cancer/chronic fatigue, multiple sclerosis/chronic fatigue – except ME/CFS. Fatigue in other conditions is usually proportional to effort or duration with a quick recovery and will recur to the same extent with the same effort or duration that same or next day. The pathological low threshold of fatigability of ME described in the following criteria often occurs with minimal physical or mental exertion and with reduced ability to undertake the same activity within the same time for several days.​

This neurological fatigue is the classic, post exertional fatigue felt in ME which is particular to this disease only.

CS said that looking into neuropathology is one reason for the post mortem tissue bank. Four or five post mortems have been done and only one case of dorsal root ganglionitis (inflammation in a bundle of nerves outside the spine and the peripheral nerve system) had been found but no evidence of encephalomyelitis (brain and spine inflammation.)

This could explain the sensory symptoms of tingling and pain. These are also symptoms of Sjögren’s syndrome which involves peripheral neuropathy.

Dr Sarah Myhill [SM] felt that too much energy has been expended on looking for an appropriate name when the real matter is “Why?”

What are the underlying pathological reasons for this disease? Byron Hyde has done functional brain scans on PWME which have shown holes in the brain like those caused by stroke: energy was just not being supplied there for those parts to function. However, structural scans fail to show up any problem.

Again she used the analogy of a car: with defective spark-plugs it wouldn’t work but would look fine. Therefore, she doubted that PM studies could be very helpful because the problem is at cellular level.

Heart failure, for example, is the result of mitochondrial disorder even where the blood supply is inadequate. If the mitochondria are not supplied with adequate energy or can’t convert it to O2, ATP, etc. then the heart muscles cannot contract properly. PMWE have low cardiac output: this explains their low blood pressure, feeling better when lying down and having POTS.

At rest the brain weighs just 2% of the total body weight but uses 20% of the body’s energy; if it is not delivered then the brain can’t work properly so cognitive dysfunction results. The eye works 10 times as fast as the brain so severely affected PWME don’t have the energy for the conversion of photons to images to the brain so intolerance results. She thinks that energy delivery is behind these fundamental lesions in the brain.

CS Agreed that mitochondrial function is important and mentioned the muscle biopsy done on his leg but that we still need to look at PM tissue for more information on the pathology as well.

JC picked up on the mention of Byron Hyde who considers the name ME as important. She quoted that 30 years ago a set of tests were performed on patients presenting with suspected ME but after use of the term CFS these are no longer done. The conclusion is that doctors thought ME an important disease but not CFS.

CS agreed that there is hostility to ME by doctors but this can only be reversed by pathological evidence to support it.

JC joked that we must educate them.

CS, also jocularly, commented that we need the evidence in order to do this.

NS said we wouldn’t need this evidence if we could find a cure. You wouldn’t see the psychiatrists for dust! This caused hilarity and applause in the audience.

The full report might be worth a thread of it's own, but the above seemed worth posting here. Perfect harmony and accord :)
 

Firestormm

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Scottish Health Care Needs Assessment used as example in the following review from Smith and Wessley dated 17 November 2012

Unity of opposites? Chronic fatigue syndrome and the challenge of divergent perspectives in guideline development

http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.abstract

Abstract

Guideline development by its nature is a process and method of integration and synthesis of information, be it originating from research, evidence-based medicine, clinical findings, patient experience and/or individual narratives of an illness or disease.

In the majority of cases, it can be assumed that this information and these ideas are travelling in the same direction; however, it is possible that the objective and subjective cannot be synthesised, and appear mutually contradictory.

In this commentary, an example of where this might be the case has been analysed: a report published by the Scottish Public Health Network, a Health Care Needs Assessment of Services for people living with myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

It appears from reflection and analysis of this document that this process may indeed have gone awry. We propose that, if followed, this document would lead to the adoption of dangerous diagnostic criteria for ME/CFS, as well as preventing patients from making informed decisions about treatment options, and discouraging clinicians from following evidence-based medicine and recommending proven treatments for ME/CFS, because of potential implications for future commissioning.

This commentary seeks to highlight some of the problems, contradictions and unintended consequences of a divergence between patient perspectives and evidence-based medicine despite probably sharing the same aim, that of improving patient care and striving for better understanding and better treatments for disease.

Full Review: http://jnnp.bmj.com/content/early/2012/11/16/jnnp-2012-303208.full.pdf html available free for download, view on line.

Will have a read. Might be worth it's own thread for discussion...

The following are those considered in the review:

Mackie P, Dougall R, Conacher A. Health Care Needs Assessment of Services for
people living with ME-CFS, Scottish Public Health Network. 2010. http://www.
scotphn.net/pdf/Final_report_web_version_271110.pdf (accessed 11 Mar 2012).

Mackie P, Dougall R, Conacher A. Health care needs assessment of services for
people living with ME-CFS- short version for patients, Scottish Public Health
Network. 2011. http://www.scotphn.net/pdf/ME-CFS_short_report_-_2011_09_
09_Final.pdf (accessed 11 Mar 2012).

Carruthers BM, Jain AK, Meirleir KL, et al. Myalgic encephalomyelitis/Chronic
Fatigue Syndrome; Clinical Working Case definition, Diagnostic and Treatment
Protocols. J Chron Fatigue Syndr 2003;11:1–115.

The above now has it's own thread: http://forums.phoenixrising.me/inde...-perspectives-in-guideline-development.20481/
 

Firestormm

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Fall of the Cross Party Group on ME a written summary of the incident: http://www.edmesh.org.uk/2013/02/fall-of-the-cross-party-group-on-me/

I also noticed that a recent answer in parliament reaffirmed the position re CFS/ME being a neurological condition of unknown origin:

In a written answer provided on 11 February 2013, Minister for Care Service Norman Lamb (Lib Dem) replied:
The World Health Organization International Classification of Diseases (ICD-10) classifies chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) under neurological disorders at Reference 93.3 and uses the terms post-viral fatigue syndrome (PVS) and benign myalgic encephalomyelitis.

The Department accepts this classification and recognises CFS/ME as a neurological condition of unknown origin.

As the symptoms of CFS/ME resemble those of other forms of debilitating illness, we acknowledge that it is not easy to diagnose single cases of the condition. Clinicians are responsible, within their area of competence, for diagnosing medical conditions and it is not the Department’s policy to advise the medical profession on clinical practice.

http://www.meassociation.org.uk/?p=14436