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The Non CFS 'CFS-ers'

Discussion in 'Latest ME/CFS Research' started by Cort, Dec 15, 2010.

  1. urbantravels

    urbantravels disjecta membra

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    Another question I have regarding biomarkers -

    I'm going to the Pacific Fatigue Lab at the end of January for the same reason as everybody else, to support my disability claim. I'm pretty sure it won't do me any permanent damage, though I expect the aftermath won't be pretty.

    It would be interesting to know if any of the proposed biomarkers will be able to differentiate the *degree of disability* in PWCs without the need for an exercise test. Just a test giving a yes or no on whether I have "true" CFS would probably not be enough to demonstrate that I am disabled from it, since lots of PWCs aren't fully disabled. And of course the SSDI sets a very high standard for needing to prove you are *totally* disabled from doing *any* kind of work.
  2. urbantravels

    urbantravels disjecta membra

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    Personal to someone who messaged me privately - yer mailbox is full, dude! I couldn't email back to say Thanks!
  3. George

    George waitin' fer rabbits

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    That's a really good question, while a few test can say if you fall in the ME/CFS group is there a test that says if you are over XXX number in say cytokines does that make you more likely to be disabled?? And what about cognative dysfunction. Here in Texas we have a short 1 hour neuropsycholgy battery that if you can't pass it you ain't going to be worth much to nobody in the working world. It doesn't mean you're stupid just that you got problems that make working really frustrating for the people that would hire you. (big grins)

    I know it was the most humiliating hour of my life!

    It will be really interesting to see how that all get's ironed out.
  4. floydguy

    floydguy Senior Member

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    What if you can think okay for one hour? The real challenge for many is the hour after hour of concentration and physical activity. There's also the variability issue. Some people might catch that one hour of testing in a good state and then be a total mess one hour later.
  5. Hope123

    Hope123 Senior Member

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    Thanks for posting this Cort and thanks for the full-text CBS.

    A few general comments -- note I have not read the full-text:

    1. Exclusions for ME/CFS also have to be vetted carefully.

    On the one hand, people who don't have ME/CFS might get misdiagnosed with it and it appears this is what this paper is doing. On the other hand, people who DO have ME/CFS might develop other illnesses or even have illnesses that might be found later to be associated with ME/CFS and might get "undiagnosed" improperly. I am not surprised that "sleep disorders" showed up but would like more details as "sleep apnea" has been used by the CDC to exclude a diagnosis of ME/CFS. However, from talking to an expert clinician as well as fellow patients, many are diagnosed with sleep apnea, get treatment for it, and yet either don't improve their apnea symptoms or if they did improve apnea, many CFS symptoms are still not improved. Same with metabolic syndrome -- are people being excluded from the diagnosis because they are obese? I don't think being fat doesn't mean you can't have ME/CFS. Again, this is a legacy of CDC exclusion criteria.

    2. A pet peeve of mine but a lot of ME/CFS studies don't tell you what tests they ran or which diagnoses they considered before diagnosing a patient with ME/CFS. So patient A could have received tests A-Z before diagnosis while patient B only received tests A-D. There is no uniformity. For example, my docs ran almost everything under the sun -- including antibodies for celiac disease, autoimmune studies, sleep studies -- at the beginning of my illness but other people's docs did not.

    3. The equipment for exercise testing is available nationwide -- same equipment also used for heart/ lung disease testing. Just that people/ health care staff need to know about it, the techniques used, and how to interpret results.
  6. George

    George waitin' fer rabbits

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    Good Question. I had mine done a few weeks after I came down with Mono, I had been to the doctors for several years prior to that trying to figure out what was wrong so I had grandual onset followed by a classic sudden onset. I was tested just a few weeks into the sudden onset (mono) so yeah, there was no question of being able to think clearly for the time it took to take the test. Plus, it was so quick and change direction so many times I don't think I could pass it now and I'm in a better place now than I was then. (sort of) I don't know. We go back to the PEM and using a fatigue test first I would think. Or you can just dig a hole in your garden the day before you go for the test. This is the only illness I know where physical exertion makes ya stupid but it works like a charm. (grins)

    What do you think Floydguy? I can't think of any test currently that doesn't show up better after exertion and Hope makes a good point that they could use cardio testing labs. Still it would take a while to set up if they go that way. Course maybe that was part of what Dennis Mangan was thinking about with the network model.

    And if the NIH is working to set up their website and doctors education this year maybe we need to stick our heads together and see what problems we can come up with and what solutions. If the NIH is working with a team of CFS docs then they have a good chance of putting together a program that will address just these kinda issues but if not then they could use some patient input. What ya think??
  7. Snow Leopard

    Snow Leopard Senior Member

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  8. WillowJ

    WillowJ Senior Member

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    I do think there's a huge misdiagnosis problem. But on the other hand, the exclusions are also a problem. One can be underweight, overweight, have cancer, have sleep disorder, etc., and still also have ME.

    Having a biomarker will solve the exclusion problem. :) This will also solve the we-don't-know-for-sure-what-all-health-risks-we-have (and most of our doctors for sure don't have a clue) problem, over time.

    Biomarker will very much help the misdiagnosis problem as well (I suspect we will then be like Lupus and other such diseases where it may take some years to get a proper diagnosis; however, with proper education and a change of heart among the medicos, it's possible we can diagnose quickly enough in enough cases to track epidemiology of infection! which would give us much better data about transmissability)
  9. alex3619

    alex3619 Senior Member

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    Hi WillowJ, exclusions are being mishandled. An exclusionary diagnosis is only valid, accorder to Fukuda, if it explains all the symptoms. I would also like to add also only if when treated the treatment restores health. Half of all patients treated for obstructive sleep apnoea who also have CFS do not improve with treatment at all.

    Nearly half of all CFS(Fukuda) patients have a diagnosable exclusionary primary sleeping disorder (most with obstructive sleep apnoea, some with central apnoea). Similarly nearly half have a neurological disorder (40% with small fiber neuropathy). Many of us also have metabolic syndrome. These are CFS(Fukuda) complications in my opinion, and cannot be used as a basis for exclusion by themselves, like ticking off a checklist. It requires some thought to exclude. The net effect is that these are only potential exclusionary conditions.

    If the UK used Fukuda (the third best definition now, I prefer the Canadian consensus definitions) things would be much better in the UK.

    Bye
    Alex
  10. WillowJ

    WillowJ Senior Member

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    very good point, Alex! I didn't realize Fukuda wanted that. Very few other things could explain PEM, eh? Maybe Myasthenia Gravis is about the only thing that I know of that might come close.

    I agree with you about most of those things being complications.

    Fukuda is third best, you prefer Canadian (me, too, of course)... what else is in your top 3? London?

    Yes, Oxford is useless. If UK used Fukuda things would be much better both in UK and around the world. Because the Oxford studies are used for most of the bad data. The CDC cites mostly Oxford studies to say what "treatments" to use and what tests not to run (funny, they still brag about their Fukuda definition, though).

    Willow
  11. alex3619

    alex3619 Senior Member

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    Hi WillowJ, actually my second and third choices are BOTH CCC - one for ME and one for CFS. I thought someone might ask me about this. ;)

    The worst definitions I know of are 1. Oxford, 2. CDC empiric, then a distant third worst: 3. Australian.

    Bye, Alex

    ps Just to clarify, I don't know nearly enough about Ramsay, London etc to evaluate them. Only the CCC is a concensus definition, and I put Fukuda third not because its great, but because most of the medical research, most of our evidence base, uses Fukuda. It is third place therefore due to historical reasons, not scientific ones (except for the historical point that it is still the international scientific standard). Alex
  12. Jenny

    Jenny Senior Member

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    This is roughly in line with what Dr Gabrielle Murphy at the Royal Free 'Fatigue' clinic says. She's found that 30% of people referred to her clinic don't have ME.

    Jenny
  13. Sasha

    Sasha Fine, thank you

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    That sounds interesting - I thought the only currently available marker involved swallowing something radioactive and going in for a fancy scan or something (distant memory, could be very wrong). Expensive, thus no chance of getting it on the NHS, especially if you don't have classic OI that shows up on a 10-min tilt test as opposed to a 30-min one for PWC.

    Any idea what sort of test it is? It would be great if it was something simple and easy to do like something from a blood draw.

    ETA: Good grief, you said it was from a blood draw and I read that and forgot. :headache: Any idea what they'd be looking for in the blood (attempting to retrieve my position with a follow-up question!).
  14. IamME

    IamME Too sick for an identity

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    Though there's no gaurantee "we used the Fukuda criteria" actually means they applied each letter. I don't think Fukuda is much better than Oxford because it allows this dishonest application and because it contains no physical signs. It doesn't even require exercise intolerance (or "PEM" if you prefer) which is surely an essential diagnostic feature! I think the Canadian is the way to go, even though it's not perfect.
  15. SOC

    SOC Moderator and Senior Member

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    I thought Dr Klimas' low NK cell function was looking to be THE biomarker at present. What happened to that? I know she wrote a paper about it, but haven't heard anything since. Does anyone know?
  16. rlc

    rlc Senior Member

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    Hi all, if you think a 40% misdiagnosis rate is bad wait till you read this!
    These two articles by American Endocrinologist Shirwan A Mirza where sent to the British Medical Journal in reply to articles in the BMJ about the CDC and NICE Diagnostic Criteria for Chronic Fatigue Syndrome. His work appears to have been ignored by the medical profession and largely unknown amongst the Chronic Fatigue Syndrome Community.
    Dr Mirza works at Endocrinology Diabetes Metblism 339 Grant Avenue Rd, Suite 1, Auburn NY 13021 Ph (315)253-2669 if anyone in that area wishes to see him.

    I Chronic Fatigue Syndrome: NICE and CDC miss the boat
    o Shirwan A. Mirza, MD, FACP, FACE, Chairman: Department Of Medicine Clinical Assistant Professor of Medicine
    Auburn Memorial Hospital, Auburn, NY 13021 USA

    The recent "NICE" guidelines in the UK like their sister guidelines from the U.S. Center of Disease Control (CDC) on this side of the Atlantic both miss the boat.
    I have seen and analysed hundreds of cases of chronic fatigue over the past decade without ever having to use the term Chronic Fatigue Syndrome (CFS). The problem with these guidelines is that they either omit major causes of fatigue or make flagrant misguided mistakes such as the following NICE statement:

    Vitamin B12 deficiency and folate levels should not be carried out unless a full blood count and mean cell volume show a macrocytosis. Vitamin B12 deficiency (or insufficiency) is extremely common even without macrocytosis. Macrocytosis is a very late sign of this vitamin deficiency. Furthermore, a concomitant iron deficiency, such as in celiac disease, would cancel out macrocytosis and the resultant mean corpuscular volume of the RBC would be normal.

    The reference range of vitamin B12, at least in the USA is outdated and new reference ranges should be implemented (300-1000 pg/ml). It is very common to miss mild vitamin B12 deficiency without checking either homocysteine or methylmalonic acid or both. The latter 2 metabolites would be both elevated when serum B12 is insufficient. Even if B12 level is 300 pg/ml but homocysteine or methylmalonic acid are elevate, a diagnosis of B12 insufficiency should be made and the fatigued patient must be treated. Vitamin B12 is a very common cause of fatigue, malaise, dizziness and vertigo in people labeled with the diagnosis of CFS.

    Vitamin D deficiency is extremely common above the latitude 0f 36 in the USA. It is even more common in Europe where milk is not widely fortified with vitamin D. The daily requirement of vitamin D of 400 IU a day is a thing of the past but still promoted as if written in stone. The recent research-supported daily requirement of vitamin D is at least 1000-4000 IU a day. 25 Hydroxy vitamin D should be between 32-100 ng/ml (see a recent NEJM review on vitamin D by Michael Holick).

    25% of the US population have metabolic syndrome. Many of these have impaired fasting glucose or impaired glucose tolerance (IGT). These pre- diabetic conditions cause fatigue via glycosuria. Fasting glucose measurement is not nearly sufficient to detect early glucose intolerance. A 2-hr glucose tolerance test (OGTT) is abosoluitely necessary to detect IGT defined as plasma glucose of > 130 from 30 minute- 120 minute during OGTT.

    Many patients with CFS have benign positional vertigo and they dont know it. They are basically unable to describe their symptoms and for lack of expression they say they are fatigued. In one such case the Romberg test was abnormal and symptoms resolved within 7 minutes of application of the Epley maneuver.

    I have yet to see a guideline on CFS that is complete. It is a good point that NICE mentions ferritin level, although I prefer iron saturation since ferritin is an acute phase reactant and could be falsely elevated during periods of acute illnesses due to any cause such as infection. Screening for celiac disease was also a good addition since this disease is relatively common in Caucasians (1% of populations with an average of a decade of late diagnosis due to lack of awareness). Addition of sleep apnea is also a step in the right direction.

    I also recommend addition of free T4 to TSH (at least once) so you dont miss central hypothyroidism. Serum early morning cortisol should be measured in every patient with CFS. If a male person has sexual dysfunction such as poor libido and erectile dysfunction, muscle weakness and infrequent shaving of beard, a free testosterone by dialysis method plus LH measurement are necessary

    In summary, for me a patient with CFS is a patient who has not been adequately investigated despite adherence to big- name guidelines of NICE and CDC. A thorough and guided investigation would yield the diagnosis in almost > 90% of patients.
    By adherence to my own time-honoured investigation, I have succeeded in abolishing chronic fatigue syndrome from my medical vocabulary.
    References: Holick MF. Vitamin D deficiency. N Engl J Med. 2007 Jul 19;357(3):266-81

    1. The myth of Chronic Fatgue Syndrome
    o Shirwan A. Mirza, MD, FACP, FACE, Pivate Ptactice
    o None
    Auburn, NY 13021 USA

    It pains me to see the concept of Chronic Fatigue Syndrome (CFS) promoted by individuals and organizations alike, including a prestigious US Government Agency such as CDC (Center for Disease Control). I do not recall using CFS as a diagnosis. The reason is simple, I go beyond the CDC criteria in investigating chronic fatigue. In their 10-minute consultation "Tiredness", Drs Moncrieff and Fletcher jump to a speedy conclusion that the patient under discussion has depression. That is exactly what patients dislike about our diagnostic acumen, attributing major symptoms in their life to mental diseases without first exhausting all the underlying physical ailments.

    I have yet to see a diagnostic criteria list for fatigue that is complete. This unfortunately includes the diagnostic criteria for Chronic Fatigue Syndrome issued by CDC. No wonder we keep citing CFS as a cause for fatigue when we ourselves fail to pinpoint the diagnosis. In my endocrine practice after ruling out the obvious causes of fatigue (mentioned in this 10-minute consultation, I will also add adrenal insufficiency which is an autoimmune disease not mentioned by name in the mini consultation), I will do the following tests and I almost always find the cause for fatigue:

    1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism. If you go by your laboratory's reference range of 0.5-5, of course you will miss the boat, and resort to the waste basket diagnosis of CFS.

    2. Check glucose tolerance test on people who are obese, have family history of diabetes, and have nocturia, or polyuria. The fasting plasma glucose should be <100 mg/dl (5.5 mmol/l).Postprandial plasma glucose should be <140 mg/dl (7.7 mmol/l)at 30-minute, 60-minute, 90-minute, and 120-minute. If you do not use these diagnostic thresholds, you will miss the diagnosis of diabetes, or impaired fasting glucose, or impaired glucose tolerance. The latter 2 are also called pre-diabetes. Pre-diabetes and diabetes both can cause severe fatigue if remained undiagnosed. The mechanism is through loss of glucose (body's fuel) in the urine (Glycosuria>

    Check vitamin B12 level. The cutoff reference range is >300 pg/mL (>221 pmol/L), or even higher. Most laboratories in the US have the reference range at 160 or 180, erroneously low. If in doubt, check homocysteine level, the reference range of homocysteine should be between 5 and 15 mol/L (some authorities use 10 as cutoff). If you rely on outdated reference range, you miss the boat and fall in the trap of CFS.

    3. In the Northern regions of the United States and Europe, vitamin D deficiency is rampant. In some cities in the United States 70% of the population in the winter might have vitamin D deficiency (such as Boston). Vitamin D deficiency is responsible for calcium and phosphorus absorption (among other host of other functions). Lack of phosphorus means lack of ATP in the body, which means that you feel tired. I have helped thousands of victims of this type of chronic fatigue through vigorous vitamin D supplementation. Not to mention that vitamin D deficiency causes also severe myalgia and bone pains (osteomalacia), often missed since vitamin D deficiency is not on the list of differential diagnosis of fatigue, including (tragically) the CDC list. Failure to recognize vitamin D deficiency leads you to misdiagnosing patients as CFS and/ or fibromyalgia. Nearly 70% of patients with fibromyalgia have vitamin D deficiency, i.e. misdiagnosed. The true reference range of 25 hydroxy vitamin D is 32-100 ng/ml.

    4. Sleep deprivation is a very common cause of fatigue. This was mentioned in the 10-minute consult.

    5. Celiac disease is relatively common (~1% of Caucasians have it, most of them undiagnosed). If you don't think of Celiac, you will be an easy victim in the trap of CFS. Celiac can cause pan-malabsorption of iron, vitamin D, B12 (mentioned above) in addition to other nutrients and minerals.

    6. If iron saturation is high, perform genetic testing for hemochromatosis. This is another relatively common genetic disease in the Caucasians.

    Any list that does not address the above diagnoses (with the reference ranges that I mentioned), would lead to missing the root causes of fatigue. CFS is not a diagnosis; it is merely re-labeling fatigue with a fancier name. It is the time that CDC revisited the criteria of CFS, and included the causes I cited above. I can say with confidence, backed up with data of hundreds, or even thousands of patients with fatigue who I have helped over years, that patients with chronic fatigue syndrome are patients who have not been adequately worked up in accordance with the criteria mentioned above. It is for this reason that CFS is not in my medical vocabulary.

    The original articles can be found here http://www.bmj.com/content/335/7617/446.extract/reply#bmj_el_175577 and here
    http://www.bmj.com/content/334/7605/1221.extract/reply

    Hi Cort, if you agree with me after reading these articles, that they contain information that everybody with a CFS diagnosis should know, could you put them somewhere on the site where everyone can see them, Thanks

    Now I dont mean in any way to offend anyone, just trying to raise awareness of misdiagnosis, but I have seen that some members of the CFS community and a lot of doctors believe that certain symptoms and tests results indicate CFS, such as PEM, DPEM, POTS/OI un-refreshing sleep, NK cell dysfunction, mitochondrial dysfunction Rnase dysfunction, cytokines etc. These things are found in numerous conditions and are in no way exclusive to CFS. As an example I have PEM I dont have CFS I have Hemochromatosis, my dad has PEM he has Parkinsons my mother had PEM until her Celiac was treated, I also have just about every other symptom ever attributed to CFS and my illness was sudden onset even though hemochromatosis isnt a sudden onset disease, the reason for this is, because like a lot of other chronic conditions its slowly takes its toll then when you catch something minor like flu you crash never to recover so its important to keep an open mind.

    I agree with Hope123 point about not properly testing people before doing studies, in no studies ever done into CFS have the patients had every tests done to rule out the other disease that could cause their symptoms and even when they do find results that indicate that the patients have other known diseases, they still dont bother to do the tests to rule these conditions out, to my mind because of this all the studies into CFS arent worth the paper there written on.

    Once again I dont want to offend anyone but I often see the Canadian Criteria being cited as the best, I consider it to be along with the others to be very bad. The reasons for this are, it contains a list of basic testing to be done, then followed by a list of additional tests that could be done but before it names the additional tests youll find this sentence Clinicians should carefully consider the cost/benefit ratio of any investigative test for each patient.

    I.E please do not waste money investigating these people properly! Doctors are supposed to investigate every single possibility to find the cause of a patients condition, not stop testing to make politicians happy by saving money. It then says in addition to avoiding unnecessary duplication of tests. Tests should be repeated Lab error rates are about 1 in every hundred!

    If you look at the basic testing list you will see things like TSH but no other thyroid tests, if you dont do other tests as well you will miss other thyroid conditions. It says just do ferritin, if you dont do Transferrin saturation as well you could miss Hemochromatosis. This list is full of faults.

    This Criteria also contains what at first looks like a very impressive list of Alternative diagnoses, but on closer inspection youll find the stunning exclusion of the most common cause of chronic fatigue and fibromlyligia symptoms Vitamin D deficiency. Youll also find its constantly saying things like endocrine, and list 4 endocrine conditions, wheres all the other endocrine conditions that could be mistaken for CFS like Pituitary tumours ETC, and it says things like Immune e.g. Aids wheres the rest of them? There are no instructions on how to tests for these conditions, a lot of the conditions on this list are normally diagnosed by specialists and most GPs dont know how to do it, I have yet to find a GP who knows that you can have a normal cortisol result and still have a major adrenal problem.

    Then we come to the list of Symptoms everything from idiopathic fatigue i.e. just being fatigued for over six mounts, to a dazzling area of symptoms that they say CFS sufferers can have. To which all I can say is well done, youve done a very good job of describing the symptoms of just about every chronic condition known to man, if theyd thrown in dermatological symptoms as well they have covered the lot! I consider this criteria along with the others to be nothing more than a well constructed recipe for misdiagnosis.

    Another point that seems to have been forgotten is that at no point did the people who wrote the original criterias ever say they where describing a disease. Heres a quote from another doctor that describes this

    Although the authors of these definitions have repeatedly stated that they are defining a syndrome and not a specific disease, patient, physician, and insurer alike have tended to treat this syndrome as a specific disease or illness, with at times a potentially specific treatment and a specific outcome. This has resulted in much confusion, and many physicians are now diagnosing CFS as though it were a specific illness. They either refer the patient to pharmaceutical, psychiatric, psychological, or social treatment or simply say, "You have CFS and nothing can be done about it."

    CFS was invented by a group of doctors, mainly psychiatrists to give a label to a group of symptoms that they had found in some patients and had not managed to work out why. The reason why this definition was invented is because doctors always want a name for things, for the simple reason that it saves a lot of time and confusion, so when two doctors communicate instead of having to list a large amount of symptoms, the simple give the name of the condition and the other doctor immediately knows what their talking about.

    The reasons why the doctors at the time where unable to explain why the patients had these symptoms is, inadequate testing, and mainly because the reference ranges used by labs for the tests that diagnose four extremely common conditions that cause these symptoms where and still are wrong (TSH, B12, Vitamin D and Glucose) and diagnoses where being missed in a lot of people because of this.

    CFS has never, is not and never will be a disease. The definition was invented mainly as a time saving device for doctors. Unfortunately some doctors never understood the original intentions of the people who invented the name, and then passed their mistaken belief to the media and now the majority of the world thinks its a disease.

    It is also important to know that unless someone has a major psychiatric illness it is scientifically, biologically and medically impossible to have these kinds of major debilitating symptoms, without it showing on diagnostic tests. The doctors who wrote these original criteria knew this, hence the name syndrome. This is also why the majority of doctors scoff at CFS. Unfortunately the majority of people who post here have failed tests that are clues to what their true illnesses are, and there being ignored by their doctors, due to the mistaken belief that CFS is a disease or just general lack of knowledge as to what they mean or laziness etc.

    I realise that some people will find what doctor Mirza and I are saying, very challenging to long held beliefs that they have had about CFS, but it is important that everybody with this diagnosis knows the truth, so they can have a chance to find out whats actually wrong with them, get it treated and get their lives back.

    I have been trying to get links together about all the information that Dr Mirza mentions, to help people, and if they have trouble with doctors they can print out the correct scientific information and take it to their doctors and hopefully get them to do something about it, unfortunately due to my own poor health and several other major dramas going on I havent been able to do it yet, but hopefully I will be able to get it done soon.

    All the best everyone
  17. lancelot

    lancelot Senior Member

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    I have seen way too many people who don't have CFS at these patient forums. Everyone should look at the Canadian Criteria. If you don't fit the the canadian criteria for CFS/ME, then you most likely don't have CFS/ME and should be looking for an alternate diagnosis.
  18. floydguy

    floydguy Senior Member

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    The above poster further states his belief that the CCC is also bad and does not rule out other diseases. I agree. Everybody should eliminate every other known diagnosis and eliminated every possible known fatiguing cause if possible before accepting the ME/CFS diagnosis. Very few have done that.
  19. Dolphin

    Dolphin Senior Member

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    In case anyone missed it, ric starts talking half way down that post - I thought it was two long copied posts (which I didn't have the mental energy to read).
  20. Dolphin

    Dolphin Senior Member

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    ric, doctors can sometimes hype how many missed diagnoses they pick up in ME or CFS patients. I know somebody who went to BH who got that impression. He didn't find anything much with them and couldn't (or didn't) offer much.

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