The differance between the Nightingale and CCC definitions.
Hi Bob, you posted this. For anyone who is interested, here is the Nightingale Definition of 'ME' written by Byron Hyde:
http://www.nightingale.ca/documents/...inition_en.pdf
Without studying the two definitions very closely, I can't work out the difference between this and the CCC.
Im going to do my best to explain the differences, because if people can understand this, a lot of people will realise that their misdiagnosed and can then try and get a doctor to properly investigate them and give them their correct diagnosis and treat and possibly cure them.
Please note everyone, Im not saying that anyone who doesnt have ME is less sick, in a lot of cases they can be a lot sicker and are at grave risk of dying from things like missed cancers, heart defects etc etc
The key difference between both the Nightingale and the Ramsey definition and the CCC is
ONSET!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I have read large amounts of the old literature on ME, and the Key finding in all of them is that ME is always! A sudden and acute onset illness! This onset stage often has symptoms like respiratory tracked infection, stomach infection, Vertigo, slightly raised temperatures etc, it is very obvious that the patient has an infection! Ramsey explains the onset in great detail in his definition link
http://www.mecfsforums.com/wiki/Ramsay_definition The importance of this is, if anyone has a gradual onset illness no matter what symptoms they have, it is impossible for them to have ME, Just as it is impossible for someone with a gradual onset illness to have Dengue fever, meningitis or bubonic plague etc, etc.
The first step Dr Hyde takes with his patients is to put gradual onset in one group, because they cant have ME and need to be extensively investigated to find out what is really wrong with them. Sudden onset go in another group and then he works out which ones have ME and which ones have other diseases that have a sudden onset.
There is nothing revolutionary or amazing about this approach its what all doctors are taught at med school, gradual onset diseases dont have a sudden onset so if you have a patient with a sudden onset then start by looking for sudden onset diseases, E.G. is a patient arrives with a sudden onset disease with fever and pains in neck etc, start looking for sudden onset diseases that fit that picture, if you start by looking for a gradual onset disease like cancer you will miss something like meningitis and kill the patient. The CCC makes no mention of this vital fact about ME!!!!! Which allows people with gradual onset diseases to be misdiagnosed as having ME by using the CCC.
I would like to add that a sudden onset does not confirm a ME diagnosis!!!! There are other sudden onset diseases that need to be ruled out!!! And if a patients illness started with a common sudden onset illness such as EBV or CMV this could be mistaken for the onset of ME but the reality could be that their ongoing problems are being caused by MS, or a Cancer of the central nervous system etc, Medicine is very complicated and nobody should be diagnosing themselves with anything by looking at a set of symptoms!!! Everybody should be being intensively investigated but this isnt happening and is something that needs to be campaigned for, because large numbers of people are suffering needlessly and often dying because of this.
Dr Hyde clearly explains it thus
Primary M.E. is an acute onset, biphasic, epidemic or endemic (sporadic) infectious disease process, where there is always a measurable and persistent diffuse vascular injury of the CNS in both the acute and chronic phases. Primary M.E. is associated with immune and other pathologies.
So he says it has an acute onset, and that it is Biphasic so after the initial phase its symptoms then change into those that become permanent!
He also clearly states as does all the literature on ME that it happens in Epidemics which means it has to be an infectious disease. The people who wrote the CCC havent done their research and have completely overlooked this vital point as well.
You will also see that he states that ME is a measurable and diffuse vascular injury of the Central nervous system and that this is measurable.
In the CCC link
http://www.co-cure.org/ccpccd.pdf it states
Quantitative EEG, SPECT and PET Scans and Spectography: qEEG analysis of brain waves, SPECT estimation of dynamic brain blood flow and PET analysis of brain metabolism show diagnostic promise and will become more important as these techniques are refined and research confirms their diagnostic value.
However for some reason they have just left it at that, Dr Hyde however has followed up on this lead and established that that SPECT, PET and QEEG scans can diagnose someone with ME and whats more can tell how severe the damage to the CNS is.
This is a major difference between the Nightingale and CCC definitions. Dr Hydes definition explains how to 100% accurately diagnose ME whereas the CCC leaves it as a guess!
Now I can imagine most people will read this and go well thats all fine and well, but how on earth am I ever going to get those scans done to confirm my illness.
This is something that desperately needs to be campaigned for, Dr Hyde needs to be contacted for more information and it needs to be taken to the media to create pressure for change.
The reality is that someone with MS has to have a Lumbar puncture and a MRI to confirm diagnosis, MRIs are far more expensive then the scans needed to confirm a ME diagnosis and there is nothing unreasonable or excessive about ME patients having them done!
If people can understand what ME is, that it has a sudden onset and a defined set of symptoms, then a lot of people will be able to easily see that they dont have it. If they also know that CFS was invented by the CDC and the Wessely School to cover up the existence of ME and there isnt a disease called CFS. Then that only leaves the possibility that they have some other illness and all the other illnesses that cause these symptoms are already known and treatable and often curable.
Im writing another post that shows that the CDC damn well knew that it was ME at Lake Tahoe and that they invented CFS to cover it up. Have found some very interesting smoking guns which I will be posting soon.
Because its so important that people realise that the use of the CCC easily leads to misdiagnosis Im going to write this next sentence in capitals and then try to explain why this happens.
DR HYDE WORKS MAINLY IN CANADA AND THE CCC IS USED TO DIAGNOSE PEOPLE IN CANADA WITH ME, HE EXTENSIVLY INVESTIGATES HIS PATIENTS AND FINDS THAT 75% OF THE PEOPLE HE SEES ARE MISDIAGNOSED!!!!! AND ONLY 25% HAVE ME!!!!!!!!
DONT RELLY ON THE CCC FOR A CORECT DIAGNOSIS!!!!!!!!!!!!!!
I know that a lot of people have a lot of faith in the CCC, and Im not trying to upset anyone but it is a very flawed document!!! So Im going to try and set out these flaws so that people will be able to see what they are and they could be misdiagnosed.
I have no doubt that the CCC was written by people who had good intentions However they have not done their research properly and are not great diagnosticians.
You can tell that they havent done their research properly, by reading the references at the end of the CCC. In the CCC reference they have not named a single publication on ME which is inexcusable, some of this ME literature was published as late as 1990. This literature was and still is available in the medical journals such as the Lancet, even the CDC managed to find it! Some of it is in the CDC references in the Lake Tahoe investigation. The CCC even mentions this CDC publication so they would of seen that these documents existed if theyd read the CDC references.
What you will find though if you look at the CCC references is that they have relied heavily on the works of the Wessely School!!!! Such as S Wessely, MC Sharpe, I Hickie, AR Lloyd etc. And the work of the CDC ,Fukuda, Holmes, Schonberger, Straus etc these people can best be summed up in two words The Enemy! Who have invented this entire problem!
The CCC is essential what its name says it is a ME/CFS definition which is a mix of some of the symptoms of ME and some of the symptoms of the diseases that get miss diagnosed as CFS. The reality is it doesnt define ME or any other disease there is no disease called ME/CFS this is as silly and unscientific as saying MS/AIDS.
One of the Keys to understanding the faults of the CCC is to realise that the idea that Post exertional malaise (PEM) is somehow exclusive to this condition is nothing more than an internet Myth, that has no scientific or medical truth to it whatsoever!! And no valid medical source has ever said that it is exclusive to ME or CFS. In the CCC you will find a large list of diseases that should be excluded, they are supposed to be excluded because they have the symptoms laid out in the CCC including PEM.
The CCC also doesnt actually say you have to have PEM, it sayss this
There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period. usually 24 hours or longer.
Obviously there saying you can have post exertional malaise, or post exertional fatigue, or post exertional Pain or a combination of these things. Whichever of these symptoms someone has, there still found in numerous other diseases. So when you look at the symptoms you need to have to qualify for ME/CFS using these criteria, you have to have.
All four of these first symptoms listed to Qualify
1 Chronic fatigue: found in 299 conditions.
http://en.diagnosispro.com/differen...ific-agent-chronic-fatigue/25271-154-170.html
2 Post-Exertional Malaise and/or Fatigue and or Pain: found in numerous conditions.
3 Sleep Dysfunction: found in numerous conditions and hundreds of millions of people who arent sick.
4 Pain e.g. Myalgia, joint pain, headaches. Again found in numerous conditions.
If you have all four of the above which just about everybody with any kind of a chronic illness does! From then on you get to pick from a very large smorgasbord of symptoms.
5. Only 2 of a large number of very different neurological/cognitive manifestations.
6 and then only one symptom from two of the next three categories, which contain large lists of extremely different symptoms.
Or to put it another way, with what the CCC says to qualify for a diagnosis of ME/CFS you can have one patient who has
1 chronic fatigue
2 Their fatigue gets worse with exertion
3 They dont sleep well
4 they get headaches
5 Confusion and impairment of concentration
6 Light-headedness, and abnormal appetite.
Well there are lots of conditions that could cause that, but it is also a very good description of depression, these symptoms are also those of Sleep dysfunction so youve just misdiagnosed people with sleep disorders and these are also symptoms of excessive under eating and over eating so anorexics and the obese could be misdiagnosed as well.
Then on the other hand you can have a person who has every symptom listed to the extreme, they can be so sick that nobody would be surprised if they died, do these two different people who would both qualify for a ME/CFS diagnosis using the CCC have the same illness? Obviously not!
Because some of the symptoms of M.E have been added to those attributed to CFS in this Criteria it has about 40 very different symptoms, (if theyd added dermatological symptoms of well they would of succeeded in naming just about every symptom its possible to have with a chronic illness). And you only have to have eight of them!!! The first four, and then only four from the following large lists of symptoms to qualify and none of these symptoms are specific to anyone illness!!
As anybody who has tried playing Lotto will tell you, trying to get eight out of forty gives you an almost endless permutations of different possibilities, which means using this criteria there is an almost endless array of possible combinations that you come up with and then say that the patient has ME/CFS. Which makes the CCC a very dangerous tool for diagnosis,
Another major problem with this definition, which proves that it was written by people who are not very good diagnosticians, is this. Although it has a large but incomplete list of diseases to rule out. The tests that it says should be done, will never, ever rule out the diseases that they name which are
Addisons disease, Cushings Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological
disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse.
These tests
Routine Laboratory Tests: CBC, ESR, Ca, P, Mg, blood glucose, serum electrolytes, TSH, protein electrophoresis screen, CRP, ferritin, creatinine, rheumatoid factor, antinuclear antibody, CPK and liver function, as well as routine urinalysis.
Do not rule out all of those diseases!!!
And it also says this
Clinicians should carefully consider the cost/benefit ratio of any investigative test for each patient, in addition to avoiding unnecessary duplication of tests.
So it actually tells doctors not to spend money investigate patients properly!
Since the invention of CFS one of the biggest problems has been the complete absence of good diagnosticians involved. The only two Ive ever heard of are Dr Hyde and Dr Mirza.
As an example of the very poor level of testing recommended by the CCC in the complexities of Diagnosis written by Dr Hyde in which he explains both how to investigate ME patients and those that are misdiagnosed
http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf
He states that he finds at least 25% of missed illnesses doing these tests most of which are blood tests therefore not very expensive
Most physicians would not find the preceding series of tests all that alarming unless they believe that the ME/CFS group of illnesses is an invented phenomenon. This simple set of tests may lead to other tests that define the disease of at least 25% of the group who are mistakenly diagnosed with ME/CFS.
Without this baseline, it is pointless to do more expensive tests since the tests already mentioned may
suggest the illness. Even physicians who agree that this set of tests is reasonable may balk at additional
tests.
1. Routine CBC with sedimentation, blood smear, ferritin, and IBC. Many patients have a
significant ferritin and IBC anomaly with normal Hb and Ht.
2. Eosinophil count.
3. Before ordering B12, check with the patient, who often is consuming vast amounts of B12 in vitamin combinations that will give abnormal highs.
4. Urinalysis and culture.
5. Immune and protein electrophoresis.
6. Immune panel only if it can be done in the immediate vicinity.
7. TSH, FT3, FT4, and thyroid antibody tests.
8. Thyroid ultrasound must be done on all patients. In the past two years, I have diagnosed six cases of thyroid malignancy with ultrasound. Often, these patients have normal serum thyroid tests.
9. Parathyroid Ab, Ca, and Ph.
10. Complete lipid profile.
11. HIV 1 and 2, treponema antibodies, hepatitis B (surface and core ab) and C, toxoplasmosis,
histoplasmosis, Lyme disease.
12. Tuberculin skin test for all patients who have not received immunization.
13. Stools for parasites, ova, and blood x 3.
14. SGOT (AST), SGPT (ALT), bilirubin, BUN, uric acid.
15. ANA and rheumatoid battery if suggested.
16. PA and lateral X-ray of chest and X-ray of sella tursica and sinuses.
17. Fasting and 3-hour glucose and glucose tolerance if indicated.
18. Smooth and striated muscle ab and mitochondria ab.
19. Street drug profile to include cannabis, cocaine, LSD, and so on.
20. Prostate specific antigen (PSA) on all males over 25.
And another 25% doing these
The most important tests that I do are Doppler scans and echocardiograms. They are more productive than
MRls or almost any other group of tests in uncovering pathology in ME/CFS patients. The following
tests, which I do on all patients, pick up another 25% of the underlying cause of disease:
Visual carotid Doppler from aortic arch
Visual transcranial Doppler to include vertebral and basilar arteries
Thyroid ultrasound
Echocardiogram and Doppler
Has anyone here had all those tests done???????????????
Just as an explanation in this document He uses the term ME for ME
ME/CFS for the ones that there is doubt whether it is ME or CFS and they need more investigation to find the true diagnosis which he then does He is not stating that there is a disease called ME/CFS.
And he uses CFS for the gradual onset group who are always misdiagnosed and dont have ME.
So to sum it all up the Nightingale definition which is written by Dr Hyde who has worked exclusively with ME patients for a quarter of a century, in Canada and all over the world, who has read all the published and literature pre 1988, and has personally gone and examined patients from all but one of over sixty of the known ME epidemics.
1 Correctly explains that ME always has a sudden and acute onset.
2 That it is biphasic, the onset is then followed by different symptoms in the second phase and this then can become a chronic permanent condition.
3 That it is an infectious illness that can occur in epidemics.
4 That it has an incubation period of 4 to 7 days
5 That ME is a persistent diffuse vascular injury of the CNS in both the acute and chronic phases.
6 Explains how it can be correctly diagnosed using the likes of SPECT, PET and QEEG scans. And tests needed to measure cardiac function etc.
7 Correctly explains the symptoms of ME
The CCC however despite the good intentions of its authors
1 Is a poorly researched document that has no mention of the over 50 years of extensive research into ME that had been done in the USA and UK and instead relies heavily on the work of the Wessely school and CDC.
2 Fails to make any mention of MEs acute onset, thereby allowing people with a gradual onset disease to be misdiagnosed with it.
3 Fails to mention the Biphasic nature of ME that helps to distinguish it from other illnesses.
4 Fails to recognize that ME is always a diffuse vascular injury of the CHS in both acute and chronic phases.
5 Fails to recognize that it has been recorded since 1934 that it occurs in epidemics and there for has to be highly infectious.
6 Fails to mention that ME has a known incubation period of 4 to 7 days and that this has been known since the earliest epidemics, and instead rambles on about EBV, CMV HHV6 etc which are immediately ruled out as causes of ME, because their incubation periods are to long E.G. EBV has an incubation period of 40 days.
7 Doesnt show that ME can be diagnosed by SPECT, PET and QEEG scans, and instead leaves no way of getting a guarantee of a correct diagnosis.
8 Doesnt correctly list the symptoms of ME and instead mixes up the symptoms of ME with those from the diseases misdiagnosed as CFS, and effectively creates a new disease ME/CFS that doesnt exist!
9 Lays out the symptoms in such a fashion that the four main qualifying criteria are those found in just about every chronic disease. And then lets people select only a handful of other symptoms from a vast list of very different symptoms that are found in a vast number of different diseases.
10 Has a list of tests that doesnt even come close to ruling out their large but very incomplete list of diseases to be excluded. And has instructions for doctors not to do more for financial reasons.
There are other faults in it, but basically they have failed to do their research and because of this had no idea of what ME is and always has been, and have created a diseases that doesnt exist, and guaranteed that lots of people will be misdiagnosed using this document. And that people selected for research using this criteria are going to be a large collection of misdiagnosed people with only a slight chance of someone with ME being in the research and ending up with more of the endlessly confusing results that come from this research that helps no one!
All the best!
