Is it worth explaining the difference between ME and CFS to the public??

[TheMoonIsBlue]

TheMoonIsBlue, I know one person diagnosed with PVFS. However, ME has not been an option in the US because someone wrote it out of the ICD-CM codes. It's back with ICD-10-CM, but like you said, virtually no one will know how to use it.

Wow, you don't need to cure a disease to have it disapper anymore.....you just need to have it written out of the ICD-CM Codes. How much simpler.....and Cheaper!

Poof! It's Gone!

 

[WillowJ]

Wow, you don't need to cure a disease to have it disapper anymore.....you just need to have it written out of the ICD-CM Codes. How much simpler.....and Cheaper!

Poof! It's Gone!

insane, isn't it?

would be funny if it weren't so serious

and then the CDC has the gall to talk about ME as if people should get diagnosed with that if they don't have the stress-caused fatigue they're claiming we have, when we say they should change their definition to reflect an actual neurological disease

 

[insearchof]

Hyde says he and two ME experts were at the meeting that drew up the Holmes definition. The CDC was unwilling to listen to the two ME experts, so they got up and left. Hyde followed them out, which was unfortunate for the sake of the definition but nice for his own education. Sorry I don't have the link handy. But this is contemporaneous. I think that answers the important part your next as well.

Thanks for clarifying that Willow.

I am aware of this fact too. Its quite interesting though, because I have carefully studied Hydes account of events there and from my reading of it (taken from addresses given as recently as last year), I read his account (and that in Oslers Web) as suggesting the following:

Parish and Shelekov (with Hyde in tow) attended that meeting. It seemed apparent to them that the agenda for the meeting had no room for a discussion on ME. So rather than try to counter what was being offered up with an ME theory, they simply saw no point and left. They made no contribution at all. They raised no query to the definition on the basis that the co hort at Lake Tahoe was something other than being presented there. Nothing. They remained mute and left. Hyde stated that he regreted this, but at the time was - in comparison to Parish and Shelekov, quite inexperienced. So he reports running after them as they left, in order to learn more.

So if you carefully listen and examine what Hyde has reported, it is not a case of the CDC having received this information from the two ME experts and they refusing to listen to it or rejecting it outright. What happened was, that the two ME experts felt that what they had to say would not be considered and thought their being there was going to be a waste of time and left. They threw up the white flag of surrender without even entering on to the battle field.

So yes, these ME experts attended -which was contemperaneous to events in question - and remained mute.

No evidence on record by the experts sadly, that this was an ME epidemic. Nothing to point to - therefore to say that the CDC blatantly ignored such a contention put before them and invented a new definition - cannot be supported on existing fact.

I wish it were otherwise, which is why I am still on the hunt. So if anyone else has anything more to offer which would correct this position, I would be grateful to receive it.

And sadly, in the absence of anything I have been able to find, I think I probably agree with you - that all reports on the history of this matter suggest that Cheney and Peterson had no idea that their patients probably had ME.

 

[Tulip]

Okay, fair enough. Your position is now clear. You believe there is a "true ME" and it is not the identified by the CCC. That is a belief which you are certainly entitled to have. It's not a fact.

I don't know who these ME groups who "know" are, but I sure wish they'd publish a clear definition so the rest of us could figure out WTH they're talking about.

Until someone comes up with a clear definition that is better than the CCC, I'm sticking with the CCC.

I said the CCC does not fully define M.E., because it does not and that is a fact. It is also a fact that the symptoms such as numbness are common, and your denial of these facts is both insulting and offensive to those with such symptoms. Have a look at all those who died of M.E., what were their symptoms?. They were paralysis, numbness, gastroparesis, seizures etc.

The M.E. groups are the ones that have always been around and way before the CCC came in. If you are fairly new to the M.E./CFS scene, I could understand your ignorance some what, if you are not then there is simply no excuse.

 

[rlc]

Hi markmc2000, Thanks for the appreciation, Im preparing a substantially larger post, which is going to have a lot more information in it, hopefully will be finished soon health and life permitting.

Hi all, The failure of patients, doctors, advocacy groups and the general public to know what ME is and what CFS is, is the reason why everybody is stuck in this nightmare and there is no hope of anybody getting any help or cures until it is sorted out, and everybody is aware of the truth and makes it known to the world.

You will notice that I didnt include the CDC and the UK government in the list of people who dont know what the difference is, for the simple reason they do know what the difference is!!!! And have been covering it up for decades.

One of the main reasons why a lot of people dont understand whats going on is they are unaware of almost all of the vast amount of historical, medical and scientific research that was done on ME when it was a recognized and well understood illness, when I say historical this doesnt mean it was done so long ago that it was done when medical science was in its infancy. Some of it dates from as late as 1990; a large amount of this research will be arriving in this forum in the near future!!!!

Because it was so extensively studied, and in a lot of cases epidemics happened in hospitals the doctors were able to study it from the first moment of onset. From this research the then world expert in this condition Dr Ramsey wrote his definition for it, and it is essential for everyone to know how, not only did MEs name get changed, but why the symptoms of ME suddenly changed just because the CDC and the Wessely School said they did!! For those that havent seen the Ramsey definition it can be found here http://www.mecfsforums.com/wiki/Ramsay_definition it states that the symptoms of ME are
Diagnosis
Symptoms at onset
They are similar to those described in the various recorded outbreaks. Thus it may be sudden and without apparent cause, as in cases where the first intimation of illness is an alarming attack of acute vertigo, but usually there is a history of infection of the upper respiratory tract or, occasionally, the gastrointestinal tract with nausea and/or vomiting.

Instead of an uneventful recovery the patient is dogged by:
Persistent and profound fatigue accompanied by a medley of symptoms such as
Headache
Giddiness
Muscle pain, cramps, or twitchings
Muscle tenderness and weakness
Paraesthesiae [numbness or tingling in the extremeties]
Frequency of micturition [urination]
Blurred vision and/or diplopia [double vision]
Hyperacusis [sensitivity to noise sometimes alternating with deafness or normal hearing]
Tinnitus [constant sound in the ears], and a
General sense of feeling awful.

Some patients report the occurrence of fainting attacks relieved by a small meal or just eating a biscuit; these attacks were the result of hypoglycaemia
All cases run a low-grade pyrexia (fever), seldom exceeding 100F (c. 38C) and usually subsiding within a week.

A very thorough examination of the central nervous system should be made and this should be accompanied by a careful estimation of muscle power, especially in the limbs and neck. A search for enlarged lymph nodes should never be omitted. If muscle power is found to be satisfactory, a re-examination should be made after exercise; a walk of half a mile is sufficient, as very few ME cases can make more.

Symptoms in chronic state
Once the syndrome is fully established the patient presents a multiplicity of symptoms which can most conveniently be described in three groups.

Muscle phenomena
[Fatiguability]: Muscle fatigability, whereby, even after a minor degree of physical effort, three, four or five days, or longer, elapse before full muscle power is restored and constitutes the sheet anchor of diagnosis. Without it I would be unwilling to diagnose a patient as suffering from ME, but it is most important to stress the fact that cases of ME or mild or even moderate severity may have normal muscle power in a remission. In such cases, tests for muscle power should be repeated after exercise.
[Pain:] In severe cases of ME, muscle spasms and twitchings are a prominent feature and give rise to swollen bands of tissue which are acutely tender. In less severe cases, muscle tenderness may not be so readily elicited but careful palpation of the trapezii and gastrocnemii (the muscle groups most commonly involved) with the tip of the forefinger should enable the examiner to detect minute foci or exquisite tenderness.
[Clumsiness:] In the aftermath of the disease patients frequently fumble with relatively simple manoevres such as turning a key in a lock or taking the cork of a bottle.
Circulatory impairment. Most cases of ME complain of
Cold extremities and
Hypersensitivity to climactic change . . .
Ashen-grey facial pallor, some twenty or thirty minutes before the Patient complains of feeling ill
Cerebral dysfunction
The cardinal features:
Impairment of memory
Impairment of powers of concentration and
Emotional lability
[Other] common deviations from normal cerebral function:
Failure to recall recent or past events,
Difficulty in completing a line of thought . . .
Becoming tongue-tied in the middle of a sentence, and a
Strong inclination to use wrong words, saying door when they mean table or hot when they mean cold . . .
Complete inability to comprehend a paragraph even after re-reading it
Bouts of uncontrollable weeping . . .
Alterations of sleep rhythm or vivid dreams, or both . . .

[Accompanying] features [that] can only be attributed to involvement of the Autonomic nervous system:
Frequency of micturition (urination)
Hyperacusis (hypersensitivity to noise)
Episodic sweating
Orthostatic tachycardia . . .

Variability and fluctuation of both symptoms and physical findings in the course of a day is a constant feature in the clinical picture of myalgic encephalomyelitis.
An alarming tendency to become chronic. [Added in the 2nd edition, 1988]

So how on earth did this well understood illness get its name changed to the demeaning and trivialising name Chronic fatigue syndrome? And have all its symptoms changed, so that six years after the Ramsey definition 2nd edition 1988, just because the Wessely School and the CDC said so it became this 1994 CDC definition link http://www.cdc.gov/cfs/general/case_definition/complete.html

1. clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (has not been lifelong); is not the result of ongoing exertion; is not substantially alleviated by rest; and results in substantial reduction in previous levels of occupational, educational, social, or personal activities
2. the concurrent occurrence of four or more of the following symptoms, all of which must have persisted or recurred during six or more consecutive months of illness and must not have predated the fatigue:
o self-reported impairment in short-term memory or concentration severe enough to cause substantial reduction in previous levels of occupational, educational, social, or personal activities
o sore throat that's frequent or recurring
o tender cervical or axillary lymph nodes
o muscle pain
o multi-joint pain without swelling or redness
o headaches of a new type, pattern, or severity
o unrefreshing sleep and
o post-exertional malaise (extreme, prolonged exhaustion and sickness following physical or mental activity) lasting more than 24 hours.

How come the sudden and acute onset has disappeared? It is one of the essential points in diagnosing ME if you have a gradual onset disease, its impossible that your problems can be caused by ME just as its impossible for them to be caused by any other sudden onset disease like Meningitis or Dengue fever. That doesnt mean that sudden onset guarantees the diagnosis of ME there are a lot of other possibilities that need to be ruled out! Dr Hyde doesnt just say you have the symptoms in the nightingale definition so therefore you have ME he extensively investigates his patients to make sure that all other possibilities have been ruled out. All the CFS definitions including the CCC completely ignore the Medical and Scientific facts about MEs sudden and acute onset!

Why did all the other symptoms disappear as well? Simple answer the CDC and the Wessely School invented a new illness to cover up the increasing outbreaks of ME that happened at the time, said that you dont have any failed test if you have it, and gave instructions not to extensively tests patients thereby insuring that no physical anomalies would get found! Which because of this, and the fact that the symptoms they have listed are basically those found in a large number of psychiatric illnesses!! They could now say that it was a psychiatric disease, thereby making people ineligible for insurance cover. The majority of the Wessely School and certain members of the CDC work for Insurance companies!! Information on these connections with insurance companies can be found here http://www.hfme.org/whobenefitsfromcfs.htm

And in the UK it was being done for this reason.

As Jonathan Rutherford, now Professor of Cultural Studies at Middlesex University, states in New Labour and the end of welfare: Professor Simon Wessely and Professor Michael Sharpe, were working on re classifying ME/CFS as a psychiatric disorder. A change in classification would trigger the twenty?four month pay out limit on psychological claims and would save the industry millions of dollars.

Members of the Wessely School are on public record making comments such as this

From MC Sharpe one of the writers of the Fukuda definition My own view has long been that the issues around CFS/ME are the same as those surrounding the acceptance and management of (patients) who suffer conditions that are not dignified by the presence of what we call disease(Ann Intern Med 2001:134:9:2:926?930).

And from Wessely, also one of the writers of the CDC Fukuda definition The description given by a leading (doctor) at the Mayo clinic remains accurate: the doctor will see that they are neurotic and will be disgusted by them

Here you will find exactly what an epidemic of ME is !

BRITISH MEDICL JOURNAL LONDON SATURDAY OCTOBER 19 1957 AN OUTBREAK OF ENCEPHALOMYELITIS IN THE ROYAL FREE HOSPITAL GROUP, LONDON, IN 1955 BY THE MEDICAL STAFF OF THE ROYAL FREE HOSPITAL http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1962472/pdf/brmedj03125-0013.pdf

In this you will find the sudden and acute onset, that it was highly infectious, the symptoms of ME, the medical investigations that they did, and the fact that a large number of people where able to make a full recovery, because the doctors at the time admitted them to hospital and looked after them and very quickly worked out that the key to avoiding relapse and the condition becoming chronic was prolonged rest long after the initial symptoms had gone. And only a small number went on to have lifelong problems. This article along with large amounts of other information is freely available; there are also vast amounts of other historical information available for anyone who wishes to subscribe or pay for individual articles at sites such as the Lancet e.g BENIGN MYALGIC ENCEPHALOMYELITIS IN NEWCASTLE UPON TYNE http://www.sciencedirect.com/scienc...7189f85895d79e1a8decbb26c0f19acd&searchtype=a

It is inexcusable for any organisation, group of researchers, scientists or doctors to say that they are doing work to help ME or CFS suffers and not know this information, the only reason for them not knowing this is either being too lazy to look for it, or deliberately hiding information, before the internet all this information has been readily available to anyone who wants it through the medical journals.

Does the CDC know about it? YES they even have Dr Gilliams investigation into the first recorded outbreak of ME in Los Angeles in 1934 in the references to their investigation of Lake Tahoe! And they have one of the best medical libraries in the world, which has all the medical journals in it! Does Wessely know about YES, he is also on public record mentioning old ME Research!

CFS begins with the Lake Tahoe epidemic although the CDC has tried to portray it as EBV, and Dr Reeves who wrote the 2005 CDC criteria is on record as saying it was just Mass Hysteria! It was an unmistakable outbreak of ME, the doctors there Cheney and Peterson new it wasnt EBV and new that it was something very strange and devastating, and they repeatedly called the CDC asking for help and were repeatedly ignored until eventually the CDC turned up. The idea that any doctor on the planet would ring the CDC because they thought they had a lot of EBV cases is absurd! Every doctor knows about EBV and that its a common place illness that doesnt have the symptoms that they observed at Lake Tahoe, and the idea that the CDC would go and investigate a lot of cases of EBV is equally absurd, 90% of the worlds population gets it at some stage in their lives!

The doctors their worked out that it had an incubation period of between 4-7 days, as has always been recorded with ME. It was well known at the time and for a long time before hand that EBV has an incubation period of 40 days! It is impossible that it was EBV, and the CDC would have known this. Dr Hyde has been and examined survivors of the Lake Tahoe epidemic and interviewed everyone involved and has confirmed it was ME.

Here you will find the CDC investigation at Lake Tahoe http://jama.ama-assn.org/content/257/17/2297.full.pdf Written by the same Dr Holmes who was latter to write the first CFS criteria in 1988 and invent CFS. In it you will find that they didnt see, let alone examine any patients and instead interviewed people by phone asked them leading question like do you feel fatigued and they only focused on 15 patients!

They say that

Epstein-Barr virus serology could not reliably differentiate individual case-patients from the others, and the reproducibility of the tests within and among laboratories was poor!

The results suggest that EBV serology is inadequate for diagnosing these illnesses and that the illnesses may not be caused by EBV. However, they also suggest that some patients with these illnesses have an abnormality of infectious and/or immunologie origin.

and

The recent research focus on EBV as the etiologic agent of chronic fatigue syndromes appears to have been too restrictive. Other agents must be considered, including both known and as yet unidentified viruses. Because this syndrome has not yet been shown to be a single disease and is of undetermined etiology, the currently popular descriptive termschronic EBV disease and

chronic mononucleosisare inappropriately specific. We propose a more generalized termchronic mononucleosis-like syndromethat is descriptive of the syndrome, yet is open to a variety of potential etiologies.

In the meantime, the diagnosis of chronic mononucleosis-like syndrome (or whatever name is used) should be understood as provisional, not final. Physicians caring for patients who are thought to have this syndrome should continue to search for more definable and often treatable conditions that may be responsible for their patients' symptoms, including lymphomas and other malignancies; chronic heart, liver, kidney, lung, and endocrine diseases; anxiety and depression; immunodeficiency
states; chronic infectious diseases such as tuberculosis; autoimmune diseases; and other chronic inflammatory conditions.

They also imply that Myalgic Encephalomyelitis is just a fatigue syndrome, and also say how ME has been in the past known by other names such as Akureyri disease, Iceland disease, Atypical Poliomyelitis, Benign Myalgic Encephalomyelitis and Epidemic Neuromyasthenia and the only way anyone could possibly know that ME has been known by those names in the pre internet days would have been to have read the articles in the medical journals which clearly show that it isnt a fatigue syndrome but is a highly infectious disease with a sudden and acute onset and symptoms of Central Nervous System damage, Hence names like Atypical Poliomyelitis because its symptoms are similar to Polio.

Basicaly what they did was show up, interviewed some patients by phone, grabbed some of the blood tests that had been done, and some of the patients tests results, (according to doctor Hyde who has interviewed the people involved at lake Tahoe The CDC doctors were more interested in playing golf,) and then disappeared back to the CDC! And apparently because Lake Tahoe relies on tourism and the ski business, and if word got out that there was an epidemic there it would close the place down costing people a lot of money, the local business owners got the congressmen to stop the CDC investigating further!

So based on the evidence that the CDC collected that even they admitted didnt show that EBV, CMV, Herpes type 1 and 2 and measles was the cause of the problem! They then invented chronic fatigue syndrome in the Holmes definition and said that they did! http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf So CFS is based on no evidence conclusive evidence whatsoever and is a lie.

As I explained in my last post the Wessely School then teamed up with the CDC and the whole Post viral part disappeared. And its was portrayed as a mysterious illness that can only be seen as a psychiatric problem because they have said theres no failed tests. And the latter Criteria like the NICE and 2005 CDC criteria have just repeated this rubbish!

CFS, as is obvious from reading any of the Historical literature is not ME, and when you know about the history of the invention of CFS it is obvious that there is no disease called CFS, it didnt just appear because the CDC and the Wessely school said it did! It is a totally bogus disease category that has no medical or scientific reality whatsoever!! That was invented to hide the existence of ME and make the people involved lots of money!

CFS really is according to Dr Hyde

a. Missed cardiac disease,
b. Missed malignancy,
c. Missed vascular disease,
d. Missed brain lesion either of a vascular or space occupying lesion,
e. Missed test positive rheumatologic disease,
f. Missed test negative rheumatologic disease,
g. Missed endocrine disease,
h. Missed physiological disease,
i. Missed genetic disease,
j. Missed chronic infectious disease,
k. Missed pharmacological or immunization induced disease,
l. Missed social disease,
m. Missed drug use disease or habituation,
n. Missed dietary dysfunction diseases,
o. Missed psychiatric disease.

Why does he say this with such confidence? Because unlike almost of the entire worlds medical profession he extensively investigates his patient and this is what he finds is wrong with the ones that dont have ME and only 25% of his thousands of patients actually have ME.

Ive noticed that whenever these discussions come up there is a tendency for people who can see that either they, or people they know, dont fit in with the correct symptoms of ME like the sudden onset etc, that they seem to get quite offended, and feel that the people who know what ME is are trying to exclude them, what they dont seem to realize is that they are the lucky ones!

Because CFS is a invented and bogus disease that being used to cover up the existence of ME, anyone who doesnt have the symptoms of ME can only possibly have a missed disease, which if they can just realise this and then do everything in their power to find a doctor whose willing to investigate them properly they have a good chance of getting a cure or at least a treatment that will greatly improve their quality of life!!

At the moment there is no research being done on ME because at the moment all the research is being done on groups of people with all sorts of missed known disease due to their incompetent doctors not bothering to investigate them, and following the instructions from the CDC and Wessely School not to investigate them. This is why all these studies have since 1988 have always come up with very contradictory results, before 1988 a lot of progress was being made in research for ME which has all come to a stop because of the Lies that are being promoted about it. Until this situation is resolved people with ME have no chance whatsoever of getting any help!

Everybody needs to recognize these facts, and campaign for ME to be recognized and investigated for what it is, so the people with it can be helped!

And campaign for CFS to be abandoned as a diagnosis because it isnt one, and everybody who has falsely been given this diagnosis who doesnt have ME to be extensively investigated to find out whats actually wrong with them and then get them the treatment they deserve and a chance to have their lives back! And to stop anybody ever getting this farcical diagnosis ever again.

Its just common sense, everybody needs to have their correct diagnosis ME patients should be ME patients, Lupus Patients should be Lupus patient, Cancer patients should be Cancer patients, Addisons patient should be Addisons patient etc, etc not just all lumped together given a demeaning name and left to suffer for the rest of their lives and often die pointlessly!

If people cant realise these facts then nobody is ever going to get help! People and groups involved in helping ME and CFS sufferers saying that ME and CFS are the same thing or that there is a disease called ME/CFS which is just an inversion of the term CFS/ME used by Wessely to try and say that ME is CFS, are unwittingly promoting the lies of the CDC and Wessely school who invented this mess in the first place!

Although ME and all the undiagnosed suffers of known diseases given a CFS diagnosis should never have been put in the same boat together, they should stick together for the mean time to promote the truth and get everybody help! CFS needs to be exposed for what it is, nothing but a meaningless and demeaning name being given to people with a large collection of diseases.

Ive notice a few comments implying that the information on the HFME website is just opinions, this is not the case, unlike almost every other source of information on ME and CFS available, this site is just about the only one that has been extensively researched and the historical and medical facts about ME have been read, and the information on this site is based on facts, the reference list for this site can be found here http://www.hfme.org/hfmereferences.htm

Almost all other web sites and information on ME and CFS are nothing more than the endless repeating of the lies of the CDC and the Wessely School and the false scientific information obtained by the constant research studies done on groups of people with all kinds of different conditions being stuck together as if they have the same illness. None of these sources of false information have ever bothered to research the truth and are locking people into a life time of suffering by convincing people that ME and CFS are the same thing and CFS is a real disease.

More correctly researched information on the subjects covered here can be found at
http://www.hfme.org/memedicalfacts.htm
http://www.hfme.org/cfsmustbeabandoned.htm
http://www.hfme.org/problemswithmecfs.htm
http://www.hfme.org/markingtime.htm
http://www.hfme.org/misdiagnosis.htm
http://www.hfme.org/wheretoaftermisdiagnosis.htm
http://www.hfme.org/whatisme.htm
http://www.hfme.org/whydepapers.htm#390403648

All the best everyone!

 

[rlc]

Hi Sickofcfs, not trying to be pedantic but people need to stick to the facts you made this statement "Furthermore, the CCC does not claim that fatigue is the defining characteristic of ME/CFS' the CCC quite clearly states

A patient with ME/CFS will meet the criteria for fatigue, post-exertional
malaise and/or fatigue, sleep dysfunction, and pain; have two or more
neurological/cognitive manifestations and one or more symptoms
from two of the categories of autonomic, neuroendocrine and immune
manifestations; and adhere to item 7.
1. Fatigue: The patient must have a significant degree of new onset,
unexplained, persistent, or recurrent physical and mental fatigue
that substantially reduces activity level.

You can't quilfy for a ccc diagnosis of ME/CFS if you don't have Fatigue!

All the best

 

[Tulip]

Ive noticed that whenever these discussions come up there is a tendency for people who can see that either they, or people they know, dont fit in with the correct symptoms of ME like the sudden onset etc, that they seem to get quite offended, and feel that the people who know what ME is are trying to exclude them, what they dont seem to realize is that they are the lucky ones!

Exactly RLC, the mind boggles as to why anyone would be offended that they don't fit into the criteria for a serious potentially life threatening disease. Be happy if you don't!. It seems to have become the elephant in the room that people who don't have M.E. do not want to discuss, and that is really sad.

 

[insearchof]

Exactly RLC, the mind boggles as to why anyone would be offended that they don't fit into the criteria for a serious potentially life threatening disease. Be happy if you don't!. It seems to have become the elephant in the room that people who don't have M.E. do not want to discuss, and that is really sad.

I have to say, that I concur and also have trouble with this. Why would anyone be dying for an incurable illness? To be deemed sicker than they are? Isn't that an abberant desire?


Willow stated:

have you ever thought that perhaps people not fortunate enough to have proper investigations and a diagnosis of ME (or those who have "real CFS", not CF, but not hfme-approved ME, either), might find it offensive and hurtful to be told that they cannot join the exclusive ME club but instead actually must use the degrading term--the slave name--of CFS, in order to not be on the side of the evil oppressors?

please stop and consider this for a while.

... I'll give you a few minutes to do that...


...

...

...


...


...


who is the enemy here? who is the bad guy?



...


the bad guys are the evil Wessely school, the complacent and sometimes complicit government officials, the lazy and sometimes complicit media. not other patents.

please let's fight the real bad guys and not other patients.

I will ask you the same question Willow, who is the enemy here?


I simply point out the offense caused by a failure to acknowledge a recognised illness category/diagnosis of ME to patients who had it pre CFS and you start to point the gun at me-when it is very clear by your comments that the only reason you are doing so, is because of envy. Envy on the part of others who have not had the same opportunity as those who were considered for and or received an ME diagnosis.

Please stop vilifying ill people who have a diagnosis that is simply different from your own or from the collective and had different opportunities.

And please consider the following:

Were ME patients responsible for the CFS creation be it oxford, holmes, fukuda, as incorporated into the CCC? No.

Is it the fault of ME patients that a lot of people cannot find appropriate tests and or a doctor to confirm and or rule out a diagnosis of ME? No.

Do I feel for those patients? Absolutely.

But these people have a choice. They can either - sit there, moan, tear down ME groups and vilify them as the enemy who is some how strangely going to deny them a diagnosis that may not even be appropriate to them OR they can take action, learn what they can about ME, find a doctor and get more tests done and have ME confirmed or ruled out.

If I was in their shoes, I would be investing my time in the later, not the former and I would be actively working towards identifying the underlying cause of my illness and doing all I could to throw at it and get my life back.

I feel for those who probably have ME and have been left to rot in a CFS or PVF waste land. It is why I am actively doing what I can to ensure, that ME is not buried once again -by certain groups trying to run off with the name plastering it over the top of any CFS criteria or in something thats close to ME but is a hybrid: CCC.

I noted Willow you also stated this:

I hope it works because I really think we're on the side of reason and science. There's definitely some support for dividing ME up into subgroups (or different diseases, but the difference between the diseases vs. subgroups is really semantics), but to say it's ME on the one hand and CFS on the other is over the top, IMO.

Try telling Wallis, Henderson, Gilliam, Acheson, Skelekov, Marinacci, Ramsay, Richardson, Parish, Pellew, Hyde and Dowsett - just to name a few.... that their scientific observations and collective work stemming over fifty years, is ''over the top''. Those of us posting the material on this subject matter refer to those scientific minds. It is not merely semantics, or even our own semantics.

You should really do yourself a favour and study the historical medical literature, because the only only thing on your side right now, is not reason and science, but ignorance and what appears to be just a hint of pride.

Try, just try - opening your mind up to the possibility that there might be a lot more out there on the subject of historical ME for you to learn and consider.

You say that the enemy is out there your right ----so keep looking out there - not at ME groups.

 

[insearchof]

Hi Tulip

I agree with your observations in relation to the Australian position. Unfortunately, our overseas friends are not offey with what is taking place here.

So in response to SOC

Well, you can only make the distinctions if you can actually clearly state them. Sure, we all need to ditch the stupid and misinformational "CFS", but if you're trying to explain the difference between a so-called "real ME", and CCC-defined ME/CFS, you're going to have a much bigger job than I think you are trying to handle.

I think Tulip has done a fine job in this thread making the distinction, so I have every confidence in her ability to communicate it to the media.

As for the media and the Australian community - on the distinction bewteen ME and CFS (in all its guises) it will be a gradual process I imagine. I am sure though, that Tulip and others like her in Australia and New Zealand, are well up for the task irrespective of size. Anzacs have never shyed away from unfavourable odds.

So Tulip will do just fine. Especially considering that it appears that unlike yourself - she has read widely - on not only CFS CCC CFS, PVF, PVFS, but also on historical ME. For example - take the following point you make:

The CCC rules out overtraining, depression, etc, etc, etc. I'm not so sure about the details of PVS, but there seem to be a lot of similarities between PVS and ME, so you'll have to be pretty careful to make that distinction clear.

That seems like a bold statement to make, from someone that does not appear too knowledgeable on historic ME and who by their own admission seemed to acknowledge a lack of understanding on the distinctions between ME CFS PVFS. Frankly, I and Ramsay (were he alive) would protest that the statement you made is incorrect. On this point I refer you to the article written by Ramsay on "The Clinicial Identity of Myalgic Encephalomyelitis'' circa late 1980s and published by the ME Association UK and written in response to an article by David, Wessely and Pelosi entitled 'Postviral Fatigue Syndrome: time for a new approach' (1988). The only similarity which might be said to be shared by ME and PVFS is a viral trigger, dysfunction to the CNS and their ICD classification. On the point of CNS dysfunction and the multitude of symptoms one would find in PVFS, I would suggest there would be greater vairability than there would be similarity, which is why I believe, both appear at G93.3 ICD 10 AM

It really might have been better had you simply said " I'm not so sure about the details of PVS..'' and left it there.

Really, with statements like this one SOC, it might be better to read more about historic ME than tell other knowledgeable folk about the size of the task ahead of them.

 

[insearchof]

Rasmay did not believe ME and PVFS were the same

Hi Willow and SoC

Ramsay, on infections:

It is fully accepted that viruses such as herpes simplex and varicella-zoster remain in the tissues from the time of the initial invasion and can be isolated from nerve ganglia post-mortem; to these may be added measles virus, the persistence of which is responsible for subacute sclerosing panencephalitis that may appear several years after the attack and there is a considerable body of circumstantial evidence associating the virus with multiple sclerosis.

There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues. In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. It is fully established that these viruses are the aetiological agents of 'Epidemic Myalgia' or 'Bornholm's Disease' and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system.

This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since any generalised virus infection may be followed by a period of post-viral debility. Indeed, the particular invading microbial agent is probably not the most important factor.

Recent work suggests that the key to the problem is likely to be found in the abnormal immunological response of the patient to the organism.


http://www.name-us.org/DefintionsPages/DefRamsay.htm

SOC commented:

Now that I see Ramsey suggested that any of a number of infections could cause ME, I'm again confused about why CCC-defined ME is not considered "real ME" by these folks. And here I thought I'd finally figured it out. Sigh.......

SOC this is not correct.

Ramsay has been quoted here but the context ignored, both within the paper itself and against a larger body of ME work.


Failing to read the paper in context or carefully - can result in the conclusion SOC arrived at.

This is what the paper and Ramsay was in effect saying:


a. There is practically always a history of recent viral infection with respiratory and or gastrointestinal presentation. He describes other noted symptoms


b. He points out that routine tests generally come back negative and patients are often referred to psychologists which is seldom helpful but often harmful


c. He makes the point that several decades of medical history indicate this is anything but a psychological illness. Then, taking up this point, he makes out the case not only for viral association, but persistent viral infection.


d. To give credence to the idea that we are not talking about a hit and run viral infection, but one that continues and persists, he gives examples of viruses that are known to hang around in the body and do just that. The examples he cites are herpes simplex and varicella-zoster


e. He cites these, for no other reason than to highlight them as two examples of viruses known to modern medicine that hang around in the tissues of the human body. He says, if these sorts of viruses can do that and are known to cause other very specific CNS diseases and dysfunctions then why not enteroviruses.


f. It should be noted, that the issue of whether enteroviruses could result in persistent infection in the body was controversial and is documented elsewhere in the literature. Consequently, in was for this reason that Ramsay uses herpes simplex and varicella zoster to make the point, that if they produce persistent infection, then it is not beyond the realm of possibility for other viruses, such as enteroviruses to also persist in the body.


He is not however, making the point that these other viruses are associated with or may be the cause of ME. In fact, he points to these agents being associated with other particular CNS diseases like MS, to make this clear.


g. So he states: There should surely be no difficulty in considering the possibility that other viruses may also persist in the tissues


What other viruses is he referring to? He introduces them in the very next sentence and states In recent years routine antibody tests on patients suffering from myalgic encephalomyelitis have shown raised titres to Cocksackie B Group viruses. Coxsackie B, being an enterovirus.



h. He hammers the point home in the next sentence:

It is fully established that these viruses are the aetiological agents of 'Epidemic Myalgia' ..and that, together with ECHO viruses, they comprise the commonest known virus invaders of the central nervous system.''

Echo viruses are also classified as enteroviruses.



i. Of course coxsackie is not the sole agent that causes ME, there are other classes of enterovirus that do. Coxsackie is only one class and he makes this point in the next sentence


j. ''This must not be taken to imply that Cocksackie viruses are the sole agents of myalgic encephalo- myelitis since eny generalised virus infection may be followed by a period of post-viral debility.'''


k. So other enteroviruses may cause ME - other than Cocksackie.

However, it is these few lines that appear to cause confusion and gets murky.



L He concludes at this juncture by stating that recent work suggests that the key to the problem is likely (not that it has or will be) to be found in the abnormal immunological response of the patient to the organism.


In making that statement it is important to remember that Ramsay did not say that enteroviral infections no longer played a role.


What he was more than likely doing, was simply acknowledging developing scientific models (ie circa 1986 the time of HIV immunological focus of science) and the possibility that other viruses aside from enteroviral infections generally, might subsequently be found to play a causative role in ME.


m. The reason he made this statement is probably due to the emerging discourse at the time on post viral fatigue states, that continued during and after the formulation of what we now know as CFS. And by the time CFS was coined in 1988, the UK rejected what it perceived as a purely American construct, prefering PVFS.


n. Science was progressing and Ramsay et al were being asked to consider ME within that understanding and frame work. An example of that was PVFS and the ''confusing statement'' (set against what was known up to that point) would fit with Ramsay's initial thoughts on ME possibly fitting into a PVFS framework, which he subsequently dismissed. Ramsay thereafter, in fact went on to state that that he never approved of the use and application of the term PVFS to ME. He stated that it was far too broad a classification and caught (like CFS today) too many PVFs.

In fact, subsequent to that confusing statement in that 1986 paper cited by you Willow, there came a time when he insisted on the use of the term ME and that it be distinguished from PVFS and in fact when an immunologist on a TV program stated that the terms were synonymous, he stated that he felt that his strong position for maintaining the distinction was justified and further that it was incumbent on him to show that the statement was ''blantantly untrue''. He stated that ME is in ''sharp contrast to all forms of PVFS'' (which I would take as including reference to PVFS caught under a misdiagnosis of CCC CFS as well).

Ref: Ramsay on "The Clinicial Identity of Myalgic Encephyelitis'' circa late 1980s and published by the ME Association UK and written in response to an article by David, Wessely and Pelosi entitled 'Postviral Fatigue Syndrome: time for a new approach' (1988).

Conclusion


Placed within the general body of and history of the progression of ME (as clarified with the emergence and use of PVFS), this statement of Ramsay does not and cannot be used to support the notion that other general viruses (associated with PVFS be it misdiagnosed as CCC CFS or not) cause ME.

This is also consistent with the seperate classifications of ME and PVFS in ICD 10 AM.

 

[markmc20001]

Hi markmc2000, Thanks for the appreciation, Im preparing a substantially larger post, which is going to have a lot more information in it, hopefully will be finished soon health and life permitting.

Thank you rlc.

Maybe consider a separate locked thread, with a identifiable title, on this very important topic?

 

[insearchof]

The take home message for us all is this one:

If people cant realise these facts then nobody is ever going to get help! People and groups involved in helping ME and CFS sufferers saying that ME and CFS are the same thing or that there is a disease called ME/CFS which is just an inversion of the term CFS/ME used by Wessely to try and say that ME is CFS, are unwittingly promoting the lies of the CDC and Wessely school who invented this mess in the first place!

Although ME and all the undiagnosed suffers of known diseases given a CFS diagnosis should never have been put in the same boat together, they should stick together for the mean time to promote the truth and get everybody help! CFS needs to be exposed for what it is, nothing but a meaningless and demeaning name being given to people with a large collection of diseases.

Agree with this and thanks for your clear and conscise contribution rlc Very much appreciated.

 

[SOC]

Hi Sickofcfs, not trying to be pedantic but people need to stick to the facts you made this statement "Furthermore, the CCC does not claim that fatigue is the defining characteristic of ME/CFS' the CCC quite clearly states

A patient with ME/CFS will meet the criteria for fatigue, post-exertional
malaise and/or fatigue, sleep dysfunction, and pain; have two or more
neurological/cognitive manifestations and one or more symptoms
from two of the categories of autonomic, neuroendocrine and immune
manifestations; and adhere to item 7.
1. Fatigue: The patient must have a significant degree of new onset,
unexplained, persistent, or recurrent physical and mental fatigue
that substantially reduces activity level.

You can't quilfy for a ccc diagnosis of ME/CFS if you don't have Fatigue!

All the best

rlc,

I stand by my statement. It was carefully worded to be consistent with the claim that fatigue is the defining characteristic of CCC-defined ME/CFS. It is not the defining characteristic -- it is one of a substantial number of qualifying criteria as demonstrated in the quotation from the CCC you provided.

If one wants to claim that one of many criteria is "the defining characteristic", one might just as well claim that neurological or immune manifestations are "the defining characteristic" of CCC-defined ME/CFS. It would be no more of a fact than claiming "fatigue is the defining characteristic." The CCC does not identify any single symptom or test to be "the defining characteristic" of ME/CFS.

Agreed, people do need to stick to the facts.

 

[SOC]

Exactly RLC, the mind boggles as to why anyone would be offended that they don't fit into the criteria for a serious potentially life threatening disease. Be happy if you don't!. It seems to have become the elephant in the room that people who don't have M.E. do not want to discuss, and that is really sad.

I think WillowJ pointed out very clearly why people are "offended" as you call it. It's because you want to claim some elitist group (in which you conveniently include yourselves but cannot clearly define) has the complete "right" to the use of ME anywhere in it's name, while dumping the hated slave-name "CFS" on the rest of the patient population. Pretty rude, if you ask me.

People are not offended that they don't fit into your criteria (whatever they are); they are disgusted that you get in a snit if other extremely ill people use a commonly used term for their illness. What, everybody else should use "CFS" because you think you know (even though you can't list) the qualifying criteria for "true ME" and it's not what "everyone else" has?

Here's a useful bit of info for you -- most of the people here are just as sick as you are! They don't want to have a potentially life-threatening disease, but they do. It's not just you, in case you hadn't noticed.

 

[SOC]

I said the CCC does not fully define M.E., because it does not and that is a fact. It is also a fact that the symptoms such as numbness are common, and your denial of these facts is both insulting and offensive to those with such symptoms. Have a look at all those who died of M.E., what were their symptoms?. They were paralysis, numbness, gastroparesis, seizures etc.

The M.E. groups are the ones that have always been around and way before the CCC came in. If you are fairly new to the M.E./CFS scene, I could understand your ignorance some what, if you are not then there is simply no excuse.

Stating your opinion and then claiming it as a fact does not make it a fact. If you want to have a civil debate, you need to back up your claims with some evidence.

I am not ignorant. That is an offensive personal remark.

You can comment on what I've said, and heartily disagree with it, but insulting me personally is a violation of forum rules.

 

[insearchof]

Hi Themoonisblue

Unfortuantely, I have never heard of anyone being diagnosed with "Post Viral fatigue Syndrome."

I have here in Australia, and the odd one or two I have heard of, were interestingly diagnosed by immunologists.

I think Leigh Hatcher, a well known media identity in Australia, was diagnosed with PVFS if I remember correctly.I also think he was diagnosed by an immunologist - though cannot be certain because its been a while since I have read his book.

PVFS was favoured in UK and England prior to the Oxford CFS criteria I believe.

So PVFS diagnoses would probably be had by those who had an illness in the late 80s early and sometimes into the 90s. I think Leigh Hatcher fell ill in the late 1990s.

By the time the RACP Australian CFS Guidelines (Fukuda) came in here around 2001 - PVFS probably got swallowed up into the misnomer that Ramsay tried to correct - that PVFS and CFS are one and the same. So physicans and immunologists probably skip PVFS and go straight to CFS. Though I dare say, that if your referred to a physican here before an immunologist, your more than likely to end up with a CFS diagnosis, but there might still be a chance that if you skipped the physician and went straight to an immunologist you might end up with a PVFS diagnosis instead (but I think today that is probably remote because of the misconception that PVFS and CFS are the same)


I think it would be rare to find an individual in the USA with a PVFS diagnosis.

Or, In the United States, ME for that matter. Is ME even taught in medical schools here? Maybe if a person has abnormal MRI and SPECT scans they will be given an MS or atypical MS diagnosis. Otherwise, it seems you can either chose from: CFS, CFS or CFS. And they say Goodbye, Goodbye, Goodbye to any further probing into the cause of your illness unless you get a great doctor or you can do the research yourself. Getting treatment, is another matter altogether.

As I understand it - they dont teach CFS at medical schools here. There is a chance that undergrad med students have heard of CFS, but I am certain that (based on one conversation I had with an intern) that they have never heard of ME here. I would be surprised if they taught ME in a med school anywhere in the world, for the reasons detailed in rlc posts.

As for an abnormal MRI - the lesion distribution and pattern for MS is very distinct and it is differnt from the pattern seen in ME patients. Though radiographers and neurologists as a general rule, do not know what to look for with regard to ME lesions/pattern and distribution. You need your film examined by an ME expert who has seen enough of them to know. Otherwise I guess at a pinch, it is possible that a diagnosis of atypical MS would be given and in any event, much more readily than an ME diagnosis.

Your right though. You have to do the research and find a doctor and get the tests done and then work on a treatment plan - of some sort

I somehow doubt, if all this information is brought to a doctor and a person clearly does have PVFS, they are not going to have their diagnosis changed............it seems once you get tagged with "CFS" you're stuck with it, unless you get diagnosed with something else really serious.

Doctors don't really care how you developed "CFS" even though it is essential, IMHO, to know that information!

Yes its not easy, but it can be done.

A lot of doctors will clearly protest and say what difference does it make? (Those that dont acknowledge or understand the distinction between ME and CFS) It actually makes a good deal of difference. If you have a persistent enteroviral infection, it has to be treated with specific anti virals. Depending on the type of enterovirus - it can also explain immune dysfunction issues. Lesions, hypoperfusion and vasticulitis - are important factors to know about re adverse drug reactions - especially for vasticulitis type conditions etc . Monitoring cardiac issues would also become more important because of the association between ME and enteroviral infection of the heart. etc etc.

Doctors here today are generally very over worked and have the equivalent of the NIH breathing down their necks at every turn, telling them they cant do this or that test if they want to keep their medical licence.

So the ''CDC - CFS waste basket - do no tests classification'' - was really a god send to a crippled health care system, more concerned with cost, than the health and well being of the populace.

The definition of CFS is not the only problem - it is probably symptomatic of a larger one: the health care system. And for that reason, they will fight tooth and nail to retain CFS.

 

[Dainty]

Take a breather, guys.

 

[Mark]

I hope that everyone has now taken the opportunity to re-read and research some of the very interesting and complex information on this thread, and to better understand each other's concerns. We are all sick, and it's very important that we don't start harming each other further while we work through these complex issues. It seems to me that there is a great need for us all to understand each other better, and we will hopefully work towards that on this thread.

It is valuable on many levels to take a break when things get heated. And whether or not we have the same illness/disease/syndrome as the next person, whether or not we are sicker or less sick than them, solidarity and mutual compassion are always possible.

We will take further breaks on this thread if it starts getting fractious again, and we invite our members to report to us if it does so (using the little triangle under the post where things got out of control).

 

[Mark]

There is a great deal of information on this thread, regarding what's been called 'historical ME', which is new to me, and although I think we should always be looking forward positively rather than dwelling on past disagreements, at the same time "those who don't know their history are condemned to repeat it". This history really ought to be well discussed and documented on Phoenix Rising if we are to include the term "ME" in our name, so I'm looking forward positively to learning more about the past.

What I am seeing at the moment is a series of "Russian Dolls".

Right now, we are all outraged by the way that "chronic fatigue" is increasingly being used to broaden out the cohort base yet again, wrapping an obfuscating blanket around ME/CFS and obscuring the real syndrome/disease/illness. The recent publication in the UK of a new study mixing terms like "ME/CFS" with the looser term of "chronic fatigue" or "CF" - a publication claiming to find that "chronic fatigue" is far more common than previously thought and now affects about 2.5 million people in the UK - rather looks like history repeating itself. This "CF" was, it seems, previously unrecognised, and those affected fit a profile that's almost directly opposite to the old definitions: the new "CF", apparently, is not a rare disease of white middle class women after all, but is widespread amongst the poor and ethic minorities...

But are all these layers of definitions what they look like to many - an exercise in concealing the original "doll" (perhaps an event such as the evolution or creation of a virus) inside an artificial shell which is completely different in character (eg. 'psychological' rather than 'a disease') - or could they perhaps represent the next generation of the same unrecognised phenomenon?

Or both?...

"Man hands on misery to man - it deepens like a coastal shelf". I won't repeat the rest of the quotation, because I do not believe in it: Yes, life itself is samsara (suffering), and while nihilism seems to solve that problem, it doesn't seem a wise solution to me. That was an old quote: we look to the future, which we can safely predict will be a very different place...even if the cycle repeats...

 

[Bob]

I've found this an extremelly interesting and helpful thread... Thanks to everyone who has contributed.