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Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist servic

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 3, 2012.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://shortreports.rsmjournals.com/content/3/1/4.full
    or
    http://shortreports.rsmjournals.com/content/3/1/4.full.pdf

    * I gave each sentence its own paragraph.
     
  2. Dolphin

    Dolphin Senior Member

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    This is an underestimate. 113 did have a confirmed CFS diagnosis with another 3 people not meeting fatigue criteria for CFS, 2 people recovered from CFS and 1 person with no conclusive diagnosis following assessment.

    However, the remaining people were never assessed (stage 2), or the details of the assessment are not known (e.g. it happened at another centre). If they were, some likely have been found to have an alternative diagnosis to CFS.

    ---
    ETA: Paper is short and easy to ready for anyone so inclined. Main info in http://shortreports.rsmjournals.com/content/3/1/4/T1.expansion.html
     
  3. oceanblue

    oceanblue Senior Member

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    Of 3,158 patients referred to the PACE clinics pre-trial, 2,346 were given a clinic* CFS diagnosis (of which 266 had "CFS but don't meet Oxford Criteria"), which works out as a 26% alternative diagnosis if I've got the maths right. Not sure how these figures square up with the published ones above.
     
  4. Dolphin

    Dolphin Senior Member

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    I'm guessing you've taken this from Figure 1 from the Lancet paper. Did you write down where you got the figures from anywhere? incl where did the 266 figure come from (I should probably know).
     
  5. Firestormm

    Firestormm Guest

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    Research: Alternative diagnoses to CFS in referrals to a specialist service

    http://www.ncbi.nlm.nih.gov/pubmed/22299071?dopt=Abstract#

    Journal of the Royal Society of Medicine short report, 2012 Jan;3(1):4. Epub 2012 Jan 12.

    Alternative diagnoses to chronic fatigue syndrome in referrals to a specialist service: service evaluation survey.

    Devasahayam A, Lawn T, Murphy M, White PD.

    NHS Greater Glasgow and Clyde, Yorkhill Hospital, Glasgow, UK.

    Abstract

    OBJECTIVE: To assess the accuracy of diagnoses made by referrers to a chronic fatigue syndrome (CFS) service.

    DESIGN: Retrospective service evaluation surveys of both rejected referral letters and medical case-notes after full clinical assessment.

    SETTING: A specialist CFS clinic in London, UK.

    PARTICIPANTS: In the first survey, we assessed rejected referral letters between March 2007 and September 2008. In the second survey, we ascertained the primary diagnosis made in case-notes of 250 consecutive new patients assessed between April 2007 and November 2008.

    MAIN OUTCOME MEASURES: Reasons for rejection of referrals and primary diagnosis in those assessed.

    RESULTS: In the first survey, 154 out of 418 referrals (37%) were rejected. Of these, 77 out of the available 127 referrals (61%) had a likely alternative diagnosis. In the second survey of clinically assessed patients, 107 (43%) had alternative medical/psychiatric diagnoses, while 137 out of 250 (54%) patients received a diagnosis of CFS.

    The commonest alternative medical diagnoses of those assessed were sleep disorders and the commonest alternative psychiatric diagnosis was depressive illness. Altogether 184 of 377 (49%) patients had alternative diagnoses to CFS.

    CONCLUSIONS: Half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses. Specialist medical assessment for patients with unexplained, disabling, chronic fatigue needs to incorporate both medical and psychiatric assessments.
     
  6. wdb

    wdb Admin

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    Ah, so that will be the 49% of patients with a 'CFS diagnosis' that respond well to CBT/GET
     
    Valentijn and SOC like this.
  7. Firestormm

    Firestormm Guest

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    I find this 'research' very interesting. On the one hand it seems to support the notion that the criteria are too broad perhaps and on the same hand, that diagnoses of CFS/ME are being handed out 'like candy'.

    On the other hand it actually supports - if you believe the research - the effectiveness of the current criteria. I shall try and get the full paper because it would be interesting to learn what the criteria were in this 'survey'.

    I couldn't help but think of PACE when reading this announcement of course and I see White is one of the authors. Does this support the efficacy of PACE i.e. that they did indeed exclude psychiatric illnesses from the recruitment? No doubt they will see it as such.

    But one could still use these finding to cast further doubt on PACE I think and of course on the efficacy of the criteria employed by the diagnosing physician.
     
  8. Dolphin

    Dolphin Senior Member

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  9. Firestormm

    Firestormm Guest

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    I have the full paper now and am reading through, the concluding remarks are interesting - though one has to ask 'What specialist services/specialist consultants are actually available to ensure this doesn't happen?':

    'In conclusion, this paper replicates two previous studies finding high rates of misdiagnosis in patients accepted and assessed in a secondary care CFS service.

    The NICE guideline suggests that patients with CFS should be diagnosed and managed in primary care, and specialist CFS services used for patients with severe and disabling symptoms. Our results suggest that this may not be the best guidance.

    These results have implications for training, care pathways and service design, particularly in primary care and those specialist services without a doctor. Specialist services need doctors who are equally confident in making both medical and psychiatric diagnoses.
    '

    It would be in keeping with other e.g. neurological conditions etc. to have only specialists able to make a diagnosis. Whether those specialists should be immunologists (as has always been the case in my own history), neurologists or GP's with special interest - I don't know. Is it important?

    Based on these figures it would suggest that GP's (Primary Care) are perhaps not up to the task for several reasons. That they are unable to diagnose - even based on the rather broad criteria currently in play - or those criteria in use are not 'fit for purpose' - or are not being applied with due diligence.

    I am interested to learn more if indeed this paper can be said to have any bearing on PACE or on other research cohorts. I haven't read it all through thus far but it didn't point specifically to any criteria being applied, it seems they simply revisited patients already with a diagnosis and carried out further assessments.

    Those assessments are not specific - from what I have been able to determine thus far - but I will try to continue reading later this morning.

    (sorry about the double post Dolphin)
     
  10. Firestormm

    Firestormm Guest

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    Conclusions
    Half of all the referred patients to a specialist CFS clinic had alternative medical and psychiatric diagnoses. Specialist medical assessment for patients with unexplained, disabling, chronic fatigue needs to incorporate both medical and psychiatric assessments.


    To rule out CFS/ME as much as to rule it in. So who should these specialists be and where can we find them?
    As the paper concludes these findings do have ramifications for training and the current structure outlined e.g. by NICE which contends that diagnoses can (and do) occur in primary care (e.g. by ones General Practitioner where a specialist service does not exist or even when it does).

    Chronic fatigue syndrome (CFS) occurs in 0.42.5% of the population, depending on how it is defined.1

    I thought this was interesting to read (again) but clearly stated like this. The reference (and I am not familiar with this study) is:

    Wessely S, Chalder T, Hirsch S, Wallace P, Wright D. The prevalence and morbidity of chronic fatigue and chronic fatigue syndrome: a prospective primary care study. Am J Public Health 1997;87:144955

    We therefore have a prevalence ranging from 250,000 (0.4%) to 1,556,549 which I think exemplifies the problem or at least has the potential to.

    This is also very useful to have as a definition I think:

    CFS is characterized by post-exertional fatigue not relieved by rest, lasting more than six months duration. The symptoms are not due to any alternative medical or psychiatric disorder, and can be accompanied by impairment of short-term memory and concentration, headache, tender lymph nodes, sore throat, post-exertional malaise lasting more than 24 hours, muscle pain, multi-joint pain, and unrefreshing sleep.2 CFS causes a significant functional impairment. It is a clinical diagnosis made after excluding any explanatory medical or psychiatric disorder. There are no laboratory investigations to confirm the diagnosis of chronic fatigue syndrome.3

    So the purpose of this paper is to demonstrate that other conditions are not in fact being successfully excluded but the paper doesnt lay the blame at deficiencies in the criteria, rather the blame is laid at the lack of knowledge among primary care physicians and points to a need for only specialists to diagnose the condition.

    References:
    2 Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994;121:9539
    3 Harvey SB, Wessely S. Chronic fatigue syndrome: identifying zebras among the horses. BMC Medicine 2009;7:58

    The NICE guideline for the assessment and management of CFS recommends that a diagnosis of CFS in adults should be made in primary care.4 Patients are then referred, if their illness is long-lasting or complex, to specialist CFS clinics for confirmation of the diagnosis and management of their illness. However, general practitioners (GPs) do not feel confident in making the diagnosis.5 To compound this, some specialist CFS clinics do not employ doctors, and rely on an accurate diagnosis being made in primary care.

    This I believe is a resounding critique of those specialist clinics that do exist. Indeed it is the main problem we now have in Cornwall (following the lack of provision in the wake of Prof Pinchings retirement).

    According to a statement from the Royal Cornwall Hospital Trust this morning, they are looking to afford greater sway to Occupational Health practitioners and Psychologists. We now have only one General Practitioner with Special Interest in the Service, and the RCHT goes against what they have said to me recently.

    They have always maintained the need for a medical consultant to diagnose and complete follow-up appointments i.e. to be the Service lead with GPSIs in support.

    The picture now is one of a distinct lack of suitably qualified (interested?) medical specialists and this is where I think the problem lies.

    However, if you create a consultant position and advertise for one (say an immunologist/neurologist or attach the CFS/ME condition formally to an existing category of responsibility) and resource it properly; surely you would attract suitable candidates?

    Reference:
    5 Bowen J, Pheby D, Charlett A, McNulty C. Chronic Fatigue Syndrome: a survey of GPs attitudes and knowledge. Fam Pract 2005;22:38993
     
  11. oceanblue

    oceanblue Senior Member

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    Sorry to hear about your problems in Cornwall.

    You can safely ignore the 2.5% prevalence, it's twaddle (alarming, too, that Simon Wessely's doctorate was awarded for epidimiology but he can't manage a proper prevalence study). The most recent study, Nacul 2011, found a prevalence of 0.2% for Fukuda-defined CFS; like the Wessely study this was set in primary care, but also like the Wessely study it didn't involve a full medical history and clinical examination by a specialist (though many of the cases might have been confirmed by specialists, it doesn't give that information).
     
  12. Firestormm

    Firestormm Guest

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    I agree about the 'twaddle' comment :D

    However, it does illustrate (and was perhaps used in the paper for this purpose?) how differing criteria, poorly applied/understood diagnostic practices can and do result in such divergent numbers of patients perhaps.

    I think this paper is attempting to demonstrate that (in this case) half of patients referred to a 'specialist service' who are then assessed by a clinical consultant and psychiatrist do not in fact have my condition.

    Apply that thinking to those divergent estimated patient populations... Ok it is a stretch to do so but I think it can be used to apply the same thinking.

    'If' the application of the criteria employed in this study were used in respect of all patients diagnosed by primary care physicians and/or referred for a diagnosis to the 'experts' in this study - then we could be looking at a much lower prevalence.

    Although the study doesn't specifically conclude this, I think it could be used to argue, that even the existing criteria (if applied correctly by specialists) should prove sufficient to confirm a correct diagnosis.

    On a side note: When the National Service Framework for Long term Neurological Conditions was assembled in 2005, 'ME' was included (as you perhaps know) having been a feature of the 'Neuro Numbers' publication from 2003. The research used to assess prevalence was that presented to the APPG in 1999 (below) suggesting a prevalence of 0.3-0.5%.

    Personally, like yourself, I have often stuck to 0.2% but an estimated patient population of 250,000 (that all too often cited number) equates with a 0.4% prevalence in the UK even based on the most recent population data (2010). Of course some will argue that one represents 'CFS' and the other 'ME' but we have buggar all to go on in this country in terms of separating the two - if indeed they should be separated.

    Anyway, sorry to detract from the research which I think is particularly important in terms of healthcare provision and a need to ensure clinical consultants are put in place to lead each and every specialist service up and down the country. Not that we have many (any) such experts - ergo the problem it would seem.

    Dowsett E G, Richardson J The Epidemiology of Myalgic Encephalomyelitis (ME) in the UK 1919-1999 Evidence submitted to the
    All Party Parliamentary Group of MPs on ME 23.11.99
     
  13. Dolphin

    Dolphin Senior Member

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    Not exactly sure what you are saying but there were no extra assessments on these patients compared to the ones normally done on patients referred.

    Also, being referred doesn't mean a GP thought they were cast-iron cases of CFS. They could just be suspected cases.
    But I think once there is a service that sounds like it covers fatigue, lots of people with fatigue may be sent there.
     
  14. Enid

    Enid Senior Member

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    I like the sound of "alternative" diagnoses - reminds me of what Byron Hyde has been saying all along - "missed diagnoses"- forget the psychiatric though.
     
  15. Firestormm

    Firestormm Guest

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    My 'bad'. I hadn't read the full paper at that point. You are right, they looked at referrals to the specialist service and more relevant to the paper, the reasons those referrals were rejected.

    'All the referrals were routinely screened by both a consultant liaison psychiatrist and a consultant physician in infectious diseases.'

    'The first survey examined all the referrals which were rejected between March 2007 and September 2008. The survey was based on analyses of the letters to the referrer in all the cases not accepted.

    The second survey studied 250 consecutive new patients assessed in the same clinic, between April 2007 and November 2008, for the primary diagnosis following clinical assessment. This survey examined the case-notes for outcomes of assessments. In both surveys, the most recent case-notes and letters were examined in cases where the outcomes were not clear.'
     
  16. Calathea

    Calathea Darkness therapy

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    I think that whether you get diagnosed correctly by a consultant or a GP is luck of the draw, and I've met GPs more knowledgeable in various fields than specialists in those fields. So I wouldn't rule out GPs. You're not going to get to a consultant if the GP who's going to refer you doesn't understand ME to a certain degree, and the same goes for other medical conditions. I'm not surprised that sleep disorders are madly under-diagnosed, from my experience. I had to wait a year for the sleep clinic, and when I got there, the specialist was totally uninterested in circadian rhythm disorders and the sleep lab technicians hadn't even heard of them. Diagnosis begins with the GP, so the GP needs to know enough about the possible conditions in question, and to be willing to learn more when they get a patient with a condition they're less familiar with.

    I also think GP-led care makes sense for ME patients, especially in countries where the health service doesn't offer any formal, universal treatment that's actually worth using, such as the UK. ME covers so many symptoms that a specialist is likely to be completely at sea with plenty of what's going on, and unsure about combining treatments for one symptom with treatments for another. GPs are also easier to access for patients who may be partially or totally housebound, and may offer telephone consultations and/or home visits. I actually prefer seeing my (excellent) GP to specialists wherever possible. She knows me well, she knows how strangely I tend to react to meds and can make a good stab at interpreting my responses to treatment, she is good with the ME, she will talk to me on the phone and occasionally come to see me at home. She will also contact specialists on my behalf when she's in doubt, and if she thinks I need to see them in person then she'll send me off to them, and if she thinks she can handle it herself she will do so with any advice she can gather. With hospital specialists, I don't even get to the appointment half the time, am too exhausted from the journey to take in much when I do get there, and then I have to hope like mad that the doctor "believes" in ME and won't just throw up their hands, saying, "You've got ME so I have no idea how to treat you." (And I'm hoping like mad for tomorrow afternoon, when I see the surgeon about that pesky gallbladder of mine.)

    On the other hand, when you don't have a good GP, and I spent many years in this situation, you're in trouble. I gather that in the US, self-referral to specialists is actually possible, though I've no idea how well it tends to work out and the financial situation always confuses the hell out of me. In any country where GPs do the referring, they are the ones who hold all the power, and they will need to have heard of the condition you have or think you may have before they will budge. So I'm all in favour of working on the GP angle.
     
  17. rlc

    rlc Senior Member

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    Glad to see another paper coming out that shows the appalling misdiagnosis rate amongst people diagnosed with CFS, hopefully it will lead to some action to remedy this sad state of affairs.

    As I see it there are several reasons for this mess happening, one, Doctors are being allowed to use CFS as a dumping ground for patients that they cant easily diagnoses. And are not forced extensively testing patients to rule out other conditions.

    Two the guidelines set out to rule out other diseases in the likes of NICE are faulty, although it is good to see that the authors of this study have gone beyond the NICE guidelines, and have picked up a few cases of Vitamin D deficiency, which NICE doesnt mention, (although they have only picked up four cases which makes me think that they must be using the out of date reference ranges) The use of out of date reference ranges and failure to include other common conditions to be ruled out in the likes of the NICE and CDC guidelines is a major reason why so many people are miss diagnosed, even if doctors follow NICE to the letter they are guaranteed to misdiagnose patients with CFS

    This article explains some of the major faults in the NICE guidelines NICE and CDC miss the boat Shirwan a Mirza http://www.bmj.com/content/335/7617/446?page=2&tab=responses

    Chronic Fatigue Syndrome: NICE and CDC miss the boat
    31 August 2007

    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
    Competing interests:
    None declared

    So we have a situation where a lot of doctors are giving a CFS diagnosis without following the NICE guidelines and even if they do, they are still going to miss diagnoses a large number of patients with CFS because the NICE and CDC guidelines on how to rule out other diseases are faulty!!!

    The third cause of this problem is the criteria for CFS, which are all including the new ICC incapable of properly diagnosing with 100% certainty an ME patient, for the simple reason that they all rely on a set of symptoms, which every ones the different criteria chose to make the diagnosis. This will never work because ME causes a large number of symptoms which overlap with a large number of conditions. Saying that having something like PENE proves that you have ME is false, it is found in other conditions, and there have been cases even in the middle of ME epidemics were the doctors were convinced that the patient had ME, but they turned out to have conditions like Addisons and Wilsons disease. The exception to this is the Hyde criteria because he uses the likes of SPECT scans to confirm the diagnosis, I must admit I was more than a bit disappointed that the ICC hasnt included any of the tests that ME patients have been shown to fail in their criteria to confirm the diagnosis, especially with G Brodericks reply to Van Der Meer and Lloyd stating Tilt tests can identify orthostatic intolerance (OI) [2022]. The use of 24-h Holter heart monitors and cardiac MRS can identify abnormalities in heart function [2326]. SPECT scans can identify cerebral hypoperfusion, and other brain imagery tests can identify additional brain abnormalities [2731].

    If these tests were included in the ICC as a part of the diagnostic procedure then it would be a lot more accurate and make it a scientifically measurable illness, that would make it a lot easier to get patients properly diagnosed and researched.

    But at present no matter which of the main criteria is used, its still largely a guess that the patient has ME, and people are going to be misdiagnosed and suffer needlessly.

    The solution is to gather together some of the worlds leading diagnosticians, who are up to date on modern research and right a comprehensive manual on how to test for and rule out all fatigue causing illnesses, that doctors must follow before they can give an ME diagnosis, if they want to say it is a diseases of exclusion, then they need to exclude other diseases before anyone can get the diagnosis.

    Interestingly this entire mess was predicted in the 1950s by Drs DA Henderson and A Shelokov who invented the US name for ME Epidemic Neuromyasthenia In the article by Dr DA Henderson Reflections on Epidemic Neuromyasthenia http://cid.oxfordjournals.org/content/18/Supplement_1/S3.extract

    In which Dr Henderson states As we saw it, efforts to study individual cases of the syndrome to determine etiology had two drawbacks. One was the problem of differentiating between a presumably microbe-induced illness and an array of syndromes of psychogenic origin. None of us who had carefully examined patients in an epidemic setting felt confident in being able to accurately diagnose individual sporadically occurring cases. Moreover, from are 1959 review article of outbreaks, it was quite clear that while the general characteristics of the syndrome in each of the outbreaks were similar, it was equally clear that there were distinct differences from outbreak to outbreak in the prominence or even presence of many symptoms and signs as well as in their severity. A case definition embracing characteristics of all the outbreaks would inevitably have to be so inclusive as to lack any semblance of specificity. That, parenthetically, was why we insisted on the modifier Epidemic in the proposed name for the syndrome.


    It was a note of caution because we were fearful, with apparent reason, that the syndrome would otherwise become a wondrous all-encompassing diagnosis for all manner of illnesses.


    And how right they were, we now have case definitions that are wondrous all-encompassing diagnosis for all manner of illnesses and millions of people are suffering needlessly because of being misdiagnosed, and nobody can find the cause of ME because the criteria guarantee mixed cohorts. Personally I think Henderson was right and that ME has so many symptoms that overlap with so many other conditions and vary so much between patients that diagnostic criteria are largely a waste of time, what is needed is to rely on properly ruling out all other conditions before giving a diagnosis, instead of relying on which ever symptom list is in which ever criteria. Personally I think a lot could be gained by going back and studying the epidemics, Im sure that it would not be too hard to track down patients from the likes of Tahoe and Lyndonville and get Lipkin to deep sequence them, I read somewhere recently that there are still samples held from the royal free epidemic, and I would imagine as it has been common practice for a long time to freeze and store blood samples from strange cases that there are still blood samples from a lot of the other epidemics that could be found and deep sequenced, being epidemics it would be more likely to find a common cause then studying sporadic cases. Until the cause or causes of ME are found, relying on the symptoms in the criteria like Henderson predicted is going to be a nightmare of misdiagnosis, as this new study shows, unless it is backed by very extensive testing to rule out other conditions.

    Hopefully these new studies will lead to a change in the way people are given the diagnosis, because so many people are suffering needlessly. But unfortunately at government levels the wheels seem to turn very slowly on this subject, and common sense is very uncommon!!!!!

    All the best
     
  18. Dolphin

    Dolphin Senior Member

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    I'm not convinced a low Vitamin D reading proves much. Ideally what one would want to see is what happens if they are treated with it. I imagine there are plenty of people who have a vitamin D deficiency - but if they were treated for it, they'd still satisfy ME or CFS criteria.
     
  19. rlc

    rlc Senior Member

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    Hi dolphin, vitamin D deficiency causes severe fatigue because it is needed to absorb phosphorus, which is needed to make the ATP work in the body, if ATP, which is like the batteries of the body isnt working then you have no energy, i.e. profound fatigue, it also causes severe bone and muscle pain, which is frequently misdiagnosed as fibromyalgia, Dr Mirza estimates that 70% of fibro cases are misdiagnosed vitamin D deficiency. It also causes depression and a large number of other symptoms, vitamin D isnt a vitamin its a hormone involved in over 200 different processes in the body, including a properly functioning immune system, basically without enough of it youre going to be very sick with symptoms that those being attributed to CFS, by the likes of NICE and the CDC.

    Because people predominantly work indoors these days and are being advised to avoid the sun, by doctors because of the skin cancer risk, this has lead to an epidemic of vitamin D deficiency, added to which modern science has found that the recommended levels of vitamin D which are still being used by laboratories around the world is way under the level where these kinds of symptoms start. I.e. there wrong!

    There are up to date doctors who are treating people properly for vitamin D deficiency including a lot that are mistakenly misdiagnosed as having CFS, and they are curing them and giving them their lives back, but these doctors are treating them with far higher doses of vitamin D then most other doctors would ever recommend, Dr Mirza in this article The myth of chronic fatigue syndrome see bottom of this page http://www.bmj.com/content/334/7605/1221?tab=responses says he has helped thousands of people with this type of chronic fatigue by using the new correct reference ranges and aggressively treating the deficiency. In this article by Dr Mirza vitamin D deficiency found on this page http://www.bmj.com/content/336/7657/1318?tab=responses he states that

    In my experience of treating more than 2000 patients with vitamin D deficiency in the cloudy upstate New York, you need to give almost 300,000-500,000 IU of vitamin D2 to raise 25, hydroxy vitamin D by 10 ng/ml.

    Which shows the level of treatment needed and why so many people taking vitamin D at a lot lower levels are not experiencing any great improvement.

    Sure there will be ME patients and patients that have a lot of other different conditions as well vitamin D deficiency, as well as those that just have vitamin D deficiency, after all being sick tends to stop you going outside, but it still needs to be treated because it will be making the patients suffering worse.

    My point about them only finding four cases of vitamin D deficiency in the people in this study, is that the weather in the UK is shit and to have only found four cases means that they cant have checked many patients and are bound to have used the old out of date reference ranges and must have missed a lot of cases. Because a recent study by Newcastle university found that 1 in 6 UK citizens have severe vitamin D deficiency see http://www.ncl.ac.uk/press.office/press.release/item/experts-call-for-action-to-halt-rise-in-rickets

    So on the basis of this modern evidence on Vitamin D this study has to have missed a lot of cases of it, when you then realise that in the UK they are still using the out of date B12 reference ranges, and B12 deficiencies are very common and cause severe symptoms at levels that are higher then would be seen as normal under the old reference ranges, it becomes obvious that they must have missed a lot of cases this as well, the same applies to the glucose ranges mentioned by doctor Mirza, i.e more misdiagnosed etc, etc by following the modern research and properly investigating his patients and ignoring NICE and CDC guidelines he finds a way higher level of misdiagnosed then this UK study does, and even just the misdiagnosis level found in this and other recent UK studies is appaling!!

    Which is something that I wish that the powers that be would get of their arse and do something about, not only are a lot of people being given a wrong diagnosis and left to suffer, but all research into ME is a waste of time and money because it is being done on mixed cohorts, unfortunately all CFS, ME activism is always aimed at trying to get the powers that be to try and find the cause of ME, and I have never seen any attempts to raise awareness of misdiagnosis and get the governments to bring in a more complete testing regime before a ME diagnosis can be given. Even if they do find the cause and a cure for ME, a far higher percentage of people are going to be left to suffer from their misdiagnoses unless something is done about it.

    Thanks for finding the article

    All the best
     
  20. Dolphin

    Dolphin Senior Member

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    It is not clear that Dr. Mirza wouldn't include people with a diagnosis of ME when talking about the "myth of chronic fatigue syndrome". He doesn't mention ME as something separate.

    I'm afraid I tend to be sceptical of individual doctors in private practice, whether they're Dr. Mirza, Dr. Hyde, or whoever. They can hype aspects about their practice and what they do. To convince me and more importantly convince the medical professional in general, they need to publish their findings in peer-reviewed journals (e-letters don't count).
    Then everything can be transparent.

    Whether there were lots of other cases of vitamin D (or indeed Vitamin B12) in this cohort who wouldn't be classed has having CFS or ME if they got it treated has not been proven it seems to me.

    If people like Dr. Hyde published more, it would be easier for people to push for testing. When dealing with medical authorities, they tend to look for papers in peer reviewed journals.
     

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