Hi All, my feeling is that people not knowing the difference between ME and CFS especially the medical community, is probably the single biggest problem facing people with ME and those with CFS. For people with ME it has meant that since 1988 when the CDC invented CFS and said that it was ME all research into ME has stopped, except that done by a few individuals like Hyde and Dowsett, before this it had been extensively researched and was well understood, if research could be resumed based solely on patients who had ME with the large advances in modern medicine since 1988 its quite likely that causes and possible cures could be found.
I feel that although the ME and CFS people have been stuck in the same boat by the likes of the CDC and Wessely School and should stick together to help each other. The CFS group needs to realise that there are not the same illnesses, ME is a disease of the central nervous system, CFS is a fatigue syndrome. And the last thing the CFS group needs is people with ME in any studies done on people with CFS because this can only lead to seriously skewed results which will help no one, If you look at all the studies into CFS since 1988 they all have very contradictory results, the reason is that there being done on people with different diseases which is why no ones able to work out whats going on!
Personally I think one of the biggest tragedies for the CFS group is the belief that CFS is a disease, its not its a syndrome, that can be caused by numerous conditions, and the belief that it is a disease causes both people with it and doctors not to continue looking for the underlying cause. Even a group of doctors from the notoriously useless NHS managed to find that 40% of patients diagnosed with CFS had been misdiagnosed and often have treatable illnesses link
http://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf 40% of the estimated 20 million people with CFS means that about 8 million people are suffering needlessly and in a lot of cases dying because fatal diseases are missed.
Dr Byron Hyde finds that only 25% of the thousands of patients hes seen have ME, of the other 75% he is able to find whats really wrong with them (missed major diseases!) about 80% of the time and a lot of them can be successfully treated and believes that his failure to find the cause in the rest is because of his own limitations as a diagnostician not because there is some mystery disease in this group. He explains his methods in detail here
http://www.wicfs-me.org/Pdf Files/Byron Hyde - Complexities of Diagnosis.pdf It is also worth bearing in mind that the majority of his patients are Canadian and it is the Canadian consensus criteria that is being used to misdiagnose these patients
A lot of these problems occur for CFS patients for two reasons one there doctors are useless and dont do extensive testing to find out whats wrong with them and two because sources like the internet etc are full of blatantly false information. A good starting point for understanding the real history of ME and CFS is this article by Dr Hyde
http://www.imet.ie/imet_documents/BYRON_HYDE_little_red_book.pdf It is also helpful to read the CFS diagnostic criteria in the order that they were written starting from the first, with a bit of additional information. Ill do my best to try an explain it.
During the 1980s the numbers of people getting sick with M.E began to increases dramatically, including the famous outbreak of M.E at Incline village, Nevada known as the Lake Tahoe outbreak. Where doctors Drs Paul Cheney and Daniel Peterson were swamped by a large number of patients who had a sudden onset and acute disease that had all the symptoms of WHO defined M.E which it unmistakably was! It had the incubation period of 4 to 7 days, this was easy to work out because the epidemic was traced back to a girls high school basketball team, who were travelling around the area on a bus to play other teams and wherever they went people rapidly became sick.
Incubation periods are worked out by tracking down the first person in an epidemic to become sick and then working backwards and finding the people who they had come in contact with, who had become sick and working out how long it had taken from contact with the first person to get sick, for the other people to get sick and so on. In all outbreaks of ME it has been between 4 to 7 days
In 1987 things start to get very strange to say the least! Enter the US CDC, Centers for Disease Control, during this year a certain Dr Gary Holmes who was the next year to write the first Chronic Fatigue Syndrome criteria and to invent the new illness CFS, went and had a look at the situation at Lake Tahoe, because some people had bafflingly come to the conclusion that it may be an outbreak of Epstein Barr virus (EBV) he then tested the people there for it and came up with results that showed it wasnt
http://www.ncbi.nlm.nih.gov/pubmed/3033337. Two of the other doctors involved in this study were J.A Stewart and L.B Schonberger who became co writers in the next year of the Holmes criteria.
What makes the idea that this outbreak of M.E could have been caused by EBV so blatantly ridiculous as Dr Hyde points out is that the incubation period was known 4 to 7 days, EBV was known at the time and had been for a very long time to have a incubation period of 40 days, so it was impossible for it to be the cause! EBV is spread through saliva even if this girls basketball team had kissed everyone they came in contact with there would have been a 40 day delay in people getting sick, there wasnt there was a 4 to 7 day delay between contact and people getting sick! What turns you from the thought that this group of CDC doctors must have been a bit thick! Into having the thought that something deeply suspicious is going on is when you realise that the CDC has one of the best medical libraries in the world with all the information on the incubation period of EBV in it! And the incubation period of EBV was common knowledge throughout the worlds medical community!
So next we come to the invention of Chronic fatigue syndrome in the first diagnostic criteria for CFS the Holmes definition
http://www.ncf-net.org/patents/pdf/Holmes_Definition.pdf written by the same Dr Gary Holmes who turned a blind eye to the whole issue of incubation periods for EBV, co written with the help of 15 other CDC doctors who also ignore the issue of incubation periods! Including J.A Stewart and L.B Schonberger. In this piece of stunningly unscientific nonsense! based on them studying the Lake Tahoe epidemic, they decided to rename WHO defined M.E, Chronic Fatigue Syndrome and say that it was caused by any one of these five viruses chronic, Epstein Barr (EBV), chronic, Cytomegalovirus (CMV) Chronic, Herpes Type 1, Chronic, Herpes Type 2 and Chronic, Measles and said to qualify for a diagnosis of chronic fatigue syndrome you had to have failed tests for any one of these five different diseases, a deeply suspicious conclusion when you consider that none of these five diseases have symptoms anywhere near those of M.E and all of them have incubation periods that are far too long and immediately rule them out as possibilities! It is also completely unscientific to group together five separate viral disease and give them all the same name, especially when the viruses have been identified and everything about them known!
So what the Holmes definition did was group WHO defined M.E with EBV, CMV, Herpes Type 1, Herpes Type 2 and measles and say they were all the same thing, (Six separate illnesses with one name???)And give them all the completely un- medical and demeaning name Chronic fatigue syndrome. In this Criteria they ignored all the published information on M.E which would have been in the CDC library, which showed that it had always been since 1934 a sudden and acute onset disease and instead didnt distinguish between sudden and gradual onset and just said that it had to be fatigue lasting more than six months. Replaced most of the known symptoms of WHO defined M.E which had been established by hundreds of Doctors over the previous 54 years, with symptoms that are basically those of chronic EBV such as palpable lymph nodes, a low grade fever and fatigue and invented the worlds first ever disease of exclusion, meaning that all other diseases that could causes these symptoms had to be ruled out. The only good thing about this criteria is that it has a reasonably large, though incomplete list of diseases that need to be ruled out.
This Criteria was then used by the CDC to abolish all the known facts of WHO defined M.E and to say that M.E was CFS and had the symptoms mentioned in Holmes criteria. If this Piece of unscientific rubbish hadnt been written then Chronic Fatigue Syndrome would not exist! It is interesting to note that two doctors involved in the writing of the Holmes criteria refused to sign their names on it, and withdrew from the CDC definitional committee because it came nowhere near close to defining M.E or what had happened at Lake Tahoe!
The next step! The plot thickens; enter the psychiatrists! In this equally unscientific piece of garbage written by Professor Simon Wessely written in 1991
http://www.kcl.ac.uk/content/1/c6/01/47/68/PDF19.pdf he expresses his view of the situation, that all the recorded outbreaks of WHO defined M.E can be explained by implying that their outbreaks mass hysteria! Although the CDC had just said in the Holmes criteria that EBV was one of the causes of CFS, He states The professional reaction to the realisation that EBV was not the causative organism was to change the label. In 1988 the term chronic fatigue syndrome (CFS) was introduced in the USA and Australia Which is an absolute lie! The 1988 CDC Holmes criteria clearly states that EBV is one of the causes! He then states that CFS is basically a psychiatric illness and that CFS is the same illness as ME and uses the term CFS/ME so therefore there both psychiatric illnesses! And theyre both the same thing!
Next we come to the Oxford criteria for CFS also written in 1991 found here
http://www.theoneclickgroup.co.uk/documents/PACE/CFS Oxford Criteria 1991.pdf
The principle author is the psychiatrist Dr MC Sharpe who is a member of the Wessely School (the doctors who follow the beliefs of Professor Simon Wessely) and 38% of the Doctors who wrote this were Psychiatrists or Psychologists! In this yet again unscientific waste of ink! You will find that the physical signs mentioned in the Holmes criteria e.g. palpable lymph nodes and low grade fevers have gone! And been replaced with no clinical signs! So no failed tests as well. The lists of diseases to be excluded have gone! And we now have two illnesses listed under the umbrella of chronic fatigue syndrome. 1 post infectious fatigue syndrome that has now become a subtype of Chronic fatigue syndrome, with no mention of what kind of infection it could be, and no recommendation that you have to fail any specific test to qualify for this diagnosis, and 2 Chronic fatigue syndrome an illness with no clinical signs and the principle symptom is fatigue. Now they have established that chronic fatigue syndrome is a psychiatric illness, because as anyone who knows anything about science will tell you, you cant have effect without cause, so if there are no clinical signs it can only be a psychiatric illness! This all gets incredibly disturbing when you realise that members of both the Wessely school and members of the CDC involved with creating Chronic fatigue syndrome are working for insurance companies and other groups that are making billions of dollars out of this because if the disease is seen as psychological the insurance companies dont have to pay the suffers of it! Detailed information on this here please read
http://www.hfme.org/whobenefitsfromcfs.htm In short Chronic Fatigue Syndrome is not a disease it is a vast money making scam!
By the time we get to the 1994 CDC Fukuda criteria
http://www.cdc.gov/cfs/general/case_definition/complete.html all pretence of post infectious fatigue syndrome has been dropped, and it is a disease in which you dont fail any tests so therefore the only possible logical conclusion is that it is a psychiatric illness! It is again a document written largely by members of the Wessely School such as Dr MC Sharp. Interestingly despite the fact that the Fukuda criteria was claimed to be written by CFS experts Dr Fukuda is not an expert in CFS he is an expert in Leprosy! And a lot of the other doctors involved were psychiatrists. Personaly I can see no logical reason why the CDC would choose to put an expert in leprosy with virtually no experience with ME or CFS in Charge of writing a Criteria for CFS!
All the following CFS criteria follow the same pattern; you fail no tests so logically it can only be viewed by the medical profession psychiatric illness! The exception to this is the Canadian consensus criteria, which was written by people who didnt know that CFS and M.E are totally different things hence the name of it ME/CFS, a review of this can be found here
http://www.hfme.org/canadianreview.htm#62990082 because the CCC which is mainly a CFS definition also has some of the features of ME in it, it can very easily lead to misdiagnosis as an example of this it includes POTS as a symptom, POTS is a symptom of ME and both doctors and patients tend to see this as confirmation that they have ME/CFS, POTS is a symptom of numerous conditions most of which cause the symptoms found in the CCC and all of them need to be medically tested for and ruled out before anyone leaps to the conclusion that having POTS means you have ME/CFS, the diseases that cause POTS can be found here
http://www.dinet.org/what_causes_pots.htm
The only criteria that are actually about WHO defined M.E and are written by people who are experts in it are
The Ramsey definition
http://www.mecfsforums.com/wiki/Ramsay_definition
And the Nightingale definition
http://sacfs.asn.au/download/NightingalesDefinitionofME.pdf
People need to realise that not only is it that Simon Wessley is the first person to invent the term CFS /ME, but also when CFS was first invented in the Holmes definition it wasnt a mystery illness it was said to be caused by chronic EBV, CMV, Herpes type one and two and Measles that could all be tested for and where known to cause these kinds of symptoms. The only Mystery is why anyone in their right minds would give five different chronic viral conditions the same name, and then say that ME is the same thing.
It is the Psychiatrists of the Wessely School that actually invented CFS as a mysterious illness with no clinical signs or failed test results, which means it can only logically be seen as a psychiatric condition. It is these same Psychiatrists that have invented the symptoms that are attributed to it, and it is this same group of psychiatrists that have been constantly pushing the line that CFS patients dont need extensive medical testing because nothing will be found and it is this that is leading to so many people being misdiagnosed.
Personally I believe that the information being kept top secret by the UK government in the file held at the medical research council, will be about the hiding of the facts about ME behind the smokescreen of the artificially created disease CFS info about this here
http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.pdf
Its easy to understand how in the past both the majority of Doctors and patients were unaware of all of this, but with the advent of the internet all this information is on line, people just need to take the time to read it in the right order, the people involved have left a very large paper trail, which they would of thought that nobody would ever see, there a large amount of the investigations into ME pre 1988 on line which clearly show its a different disease, the changing nature of CFS through the various definitions can be followed, the involvement of the Wessely school is easy to see, and there are endless articles by them that clearly show their views and the workings of their minds! Their involvement in insurance companies and government agencies that stand to gain from all of this is now on line. You can see that a large number of the people involved in the writing of the definitions had virtually no interest in ME or CFS before or after writing these definitions. You can easily type the names of diseases that are mentioned as ones to be excluded in the criteria into Google and youll soon see that the tests that are needed to rule them out are not included in the testing requirements in the criteria etc, unfortunately the majority of patients are too sick to do this and the majority of doctors who diagnose people with CFS arent interested in finding out, they seem more than happy to have a waste paper basket diagnosis to put all the cases they cant be bothered to work out, or havent got the skills to work out.
I often see a lot of debate about which criteria should be used to diagnose CFS, but the reality is that no diseases should be diagnosed by using a criteria. All a criteria does is put you in a ball park where a certain disease may be a possibility and then all the other diseases that present in a similar way need to be tested for before any kind of diagnosis is reached, All of the diagnostic criteria for CFS have symptoms that are so common to so many diseases that all qualifying for a diagnosis of CFS using these criteria does is put you in a ball park where you may have any one of over a hundred chronic conditions, it really is a waste paper basket diagnosis! Invented largely by the Wessely School, and despite some of these criteria giving large though uncomplete lists of disease to rule out, in all of them including the CCC the list of basic testing being recommended is never going to come close to ruling out all the diseases on these incomplete lists.
Personally I think that the single most important thing that the CFS community should be demanding is for the implementation of extensive lists of testing that every doctor has to do on a patient before anyone can get this diagnosis and because a lot of doctors are so out of date and often dont know what the failed tests really mean or even what some of the diseases that get misdiagnosed as CFS are (I have had a Doctor ask me what Addisons diseases is!!) Whats really needed is for a group of very good diagnostic doctors to be got together to write a manual on all the diseases that cause these symptoms and all the testing that needs to be used to diagnose these illnesses, and then this manual needs to be given to every doctor in the world to use.
Some of the diseases that misdiagnosed as CFS can be found here
http://www.hfme.org/misdiagnosis.htm
Some of the diseases that get misdiagnosed as CFS can also be found here
http://www.wrongdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm
Some of the more common and therefore a good place to start for people looking for a correct diagnosis can be found in these articles they explain how common fatigue causing illnesses are frequently not looked for by doctors and how even if they are, they are often missed because laboratories around the world are still using reference ranges that have been scientifically proven wrong.
As an example he is saying that the reference range for TSH (thyroid) should be between 0.3 and 2.5 because researchers have found that when the original reference range of 0.5 to 5.0 was decided on, they had failed to exclude people with mild hypothyroidism which had lead to the reference range being seriously skewed. This has lead to a situation where people get tests results like TSH 3.7 the doctor says its under 5.0 so its fine; when the reality is the patient has a thyroid problem and is misdiagnosed.
These researchers have then worked out how many people are having their thyroid diseases missed, when the TSH level is set at 5.0 it is estimated that 13 million Americans have Hypothyroidism. If the reference range for TSH was reduced to 2.5 it is estimated that approximately between 23 to 28 million extra Americans would be diagnosed with hypothyroidism and that these people are not getting the medication they should and often being misdiagnosed as CFS and or depression. Info on this here
http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
These problems and how to test for them are explained by Dr Shirwan A Mirza in these articles found by scrolling down these pages The myth of chronic fatigue syndrome by Shirwan A Mirza
http://www.bmj.com/content/334/7605/1221.extract/reply and NICE and CDC miss the boat by Dr Shirwan A Mirza
http://www.bmj.com/content/335/7617/446.extract/reply A Judicious Evaluation of unexplained symptoms found here
http://www.bmj.com/content/336/7653/1124.extract/reply#bmj_el_195696 He explains the problems with current TSH ranges and treatment in the article Unveiling the mysteries of the thyroid here
http://www.bmj.com/content/337/bmj.a801.extract/reply#bmj_el_200193 and gives more details on Celiac disease in the article Celiac the great imitator here
http://www.bmj.com/content/338/bmj.a3058.short/reply and vitamin D here
http://www.bmj.com/content/336/7657/1318.extract/reply#bmj_el_198052
As proof of what Im saying that a large number of people with chronic fatigue syndrom are misdiagnosed I have in the space of a couple of hours compiled this list of different tests that people on this forum have failed, it is by no means a complete lists because of the number of post here, but it more than proves what Im saying, because it is impossible for anyone disease to cause this number of failed tests.
The tests that are failed with M.E are actually very few! This is what has allowed people to try and say it is a psychiatric illness, and most of those that are failed are not blood tests but are tests like SPECT scans and Romberg tests, information here
http://www.hfme.org/metests.htm
All known diseases follow a certain pattern of tests that they fail and the number of tests that each disease causes a person to fail are not large! As an example of this primary adrenal insufficiency which causes more failed tests then a lot of diseases, causes you to have, high ACTH, high DHEA, high DHEAs, low Cortisol, low Aldosterone, high Renin, low Sodium and high Potassium, if a person has something like high Cortisol, or low Potassium then you would immediately know they have different disease.
Heres the list of failed tests
1. Serum Iron, low and high
2. Interleukin 8, high
3. Insulin, high
4. WBC, low
5. RBC, high
6. MCV, low
7. MCHC, low
8. Ferritin , low and high
9. Serum Sodium, low
10. Urine Potassium, high
11. Urine lead, high
12. Urine mercury, high
13. Haemoglobin, low and high
14. Homocysteine, low
15. Aldoseterone, low
16. Serum potassium, low
17. Urea, low
18. Triglycerides, low
19. Lymphocytes, low
20. Eosinophils, high
21. Neutrophils, low
22. ESR, low and high
23. MPV, high
24. Albumin, high
25. LDH, high
26. ANA ,positive
27. Celiac, positive
28. Lumbar puncture, Oligodonal banding
29. Hematocrite, high
30. Ceruloplasmin, low
31. Serum copper, low
32. 24 hour urine copper, high
33. Anion gap, low
34. Vitamin D, low and high
35. Vitamin A, low
36. Vitamin E, low
37. Aluminium, high
38. ACTH stimulation test, low
39. Anti thyroglobulin, high
40. Cholesterol, high and low
41. IGAs, high
42. CBC, low
43. Serum cortisol, high and low
44. Urine cortisol, low
45. Glucose, low
46. 24 hour urine adrenaline, high and low
47. DHEA, high and low
48. DHEAs, low
49. TSH, high and low
50. AST, high
51. ALT, high
52. ALP, high
53. Bilirubin, high
54. Estradiol, low
55. Free Testosterone, high and low
56. Total testosterone, high
57. Estrogen, low
58. C-reactive protein, high
59. PTH, high
60. B12, high and low
61. Total cholesterol/ HDL, high,
For those of you who can see after reading all this that there is a very high chance that your misdiagnosed and would like to find the correct diagnosis I would recommend reading this
http://www.hfme.org/wheretoaftermisdiagnosis.htm and then do everything to find a doctor who is willing to do what it takes to find out whats really wrong with you. If you can find a doctor who is willing to do the tests recommended by Dr Hyde in the above article the Complexities of Diagnosis and the additional tests explained by Dr Mirza in the articles above you stand a good chance of getting a correct diagnosis which may be treatable or even curable.
I hope writing all this out helps someone some where
All the best everyone
I hope!
