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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. rlc

    rlc Senior Member

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    Hi firestorm, yep it is kind of staggering, although we dont have exact figures, estimates of how many people have CFS run as high as 17 million even at 40% misdiagnosed thats 6.8 million misdiagnosed people.

    From what Im seeing in the types of diseases being missed, it is largely a case of doctors not doing their jobs properly, almost all of the types of illnesses that they are finding are the type of ones that GPs are trained to pick up and diagnose at med school, or at least refer to a specialist for a more intensive investigation. So a lot of the blame lies with them.

    There are diseases listed in these reports that have been misdiagnosed as CFS that are mentioned in the NICE guidelines to be ruled out, so doctors are obviously not following the NICE guidelines. And they need to be held accountable for it.

    The NICE guidelines are far from complete, and miss out a lot of conditions that should be included like vitamin D deficiency etc, as Dr Mirza points out. What is needed is a complete list of fatigue causing illnesses with instructions on what tests need doing to rule out ever disease. That doctors have to do before they can hand out a CFS diagnosis, it is supposed to be a disease of exclusion after all.

    If that was done it would solve the problem.

    What is happening now is that doctors are rushing through patients without testing them properly, and CFS is being used as a dumping ground diagnosis for all the patients that havent been tested properly by doctors who are either lazy, incompetent or over worked. Its just too easy to give them a CFS diagnosis.
    But this has to change, there has to be strict guidelines for doctors on ruling out every fatigue causing illness before anyone gets a CFS diagnosis, it needs to be made law and doctors who dont follow it get in serious trouble.

    I dont think anything will really be gained by changing the symptoms in the NICE criteria, doctors will still not follow the instructions on what diseases to rule out, unless they start being held accountable and severely punished for not following them.

    Even if the UK changed to the ICC it still wouldnt make much of a change, the symptoms in the ICC can be caused by other illnesses and if these arent ruled out, there will still be a lot of misdiagnosed. And what will happen to the patients that dont fit the ICC, but still fit NICE are they to still be left with a CFS diagnosis and still not going to be investigated properly to see if they have the right diagnosis.

    Personally I dont think CFS is a real disease and shouldnt be used as a diagnosis for anyone. But if CFS is scrapped, and just ME as defined by the ICC is used. What happens to the people who dont fit the ICC, Id imagine they will just be told their depressed, or get an, I dont know diagnosis, and still be left suffering from diseases, which if their doctors did their jobs properly in a lot of cases could be found and cured.

    As I see it, this whole misdiagnosis problem is caused by doctors not doing their jobs properly and not being held accountable for their actions. If as seems to be the case all over the world, GPs are not capable of doing what they were trained to do. Then they will have to be given proper instructions on what they have to do, and they will have to be watched to make sure they do it. This problem shouldnt be happening, but it has for decades, and it would not be hard to fix, its just a case of basic medicine being done badly!!!

    All these people shouldnt be being condemned to suffer needlessly for the rest of their lives, and there isnt a shit show of finding the cause of ME, if all these misdiagnosed people keep getting put into the ME research cohorts.

    To get together a complete list of illnesses that have to be ruled out and what tests need doing, could be done in a couple of months and sent to every doctor with instructions that they have to rule out these diseases before giving a CFS diagnosis, this would solve the entire problem.

    No doubt the powers that be would say that it is too expensive to do this, but it is a wrong view, it costs far more to have all these people on sickness benefits and not contributing tax then it would to properly diagnose them. Dr Hyde says even the most extensive investigations he does on patients cost no more than $10,000, thats less than one years benefit. So governments are not only leaving people to suffer with the wrong diagnosis, but are also paying out billions of dollars in benefits to people who should never have been on them in the first place.

    The solution is simple make sure that doctors do basic medicine correctly and give their patients the correct diagnosis, like their paid to do. they are thaught how to do this in med school. How we get the powers that be to implement this, I dont know.

    All the best
    Snow Leopard and Wildcat like this.
  2. Firestormm

    Firestormm Guest

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    Indeed although we should bear in mind that these two bits of research demonstrated the effectiveness of having specialists (specialist services) able to spot those for whom an alternate diagnosis was more suitable. So we can't infer that X% of the population with a CFS/ME diagnosis have something else of course.

    Rather it lends a certain degree of suspicion perhaps to the quality of our diagnoses. Not everyone sees a specialist for example and as you say, not everyone's diagnosing physician might have stuck to the NICE guidelines or any criteria. On the other hand I would suspect the majority of patients to have the correct diagnosis (in so far as things stand) but that's only because I do have some faith left in the system at the end of the day.

    For me - as my local service has lost it's lead consultant immunologist because of a deserved retirement - we are threatened with relying on our General Practitioners for a diagnosis and the specialist service will be reduced to Occupational health and a clinical psychologist. So these pieces of research are useful I think in pointing out the need for clinical specialists (as well as highlighting the lack of training (ability to possess specialist knowledge) amongst GPs).

    N.B. You might find this one interesting too:

    'Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study'

    From 2010 but still of use in the above context I think: http://www.biomedcentral.com/1471-2296/11/16
  3. Wildcat

    Wildcat Senior Member

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    @ Firestormm your Faith in the system and faith in the NICE Guidelines is very puzzling.


    The weight of evidence against the NICE Guidelines is very substantial. All but two of the ME patient representation charities (AFME and AYME) officially rejected the NICE Guidelines as Unfit For Purpose, with solid evidence-based reasons.
    Over twenty renowned ME/CFS experts provided Statements challenging the validity of the research that NICE used for its Clinical Guidelines. NICE relied on a handful of low quality Randomised Controlled Trials that were methodologically flawed. The UK NICE Guidelines recommend only two treatments, CBT/GET (Graded Exercise).



    One of the main criticisms of the NICE Guidelines is that the research it relied on was done on people selected by the UK Oxford criteria that can easily select people with primary depression and anxiety, but does not define or diagnose ME.
    NB GDG means Guideline Development Group, ie those who formulated the NICE Guidelines.



    Dr Irving Spur spelled it out: I have no doubt that patients in the research quoted by the [NICE] GDG did not have ME/CFS (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008).

    The GDG has placed undue reliance upon a small number of RCTs that were methodologically flawed because they did not adequately define the patient population (Dr Terry Mitchell, formerly Consultant Clinical Lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd June 2008)



    The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials however, these studies did not properly or adequately define their patient population
    (Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St Georges University of London, 11th August 2008)



    You will see from my attached treatise that I consider that the recommendation of CBT and GET as blanket treatments of clinically excellent first choice is extremely dangerous to patients. I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS
    (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)


    Dr Neil Abbot of ME ResearchUK describes the inadequacy of the research that NICE based its guidelines on:
    only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a control intervention adequate to determine specific efficacy, and their results are relatively modest.
    In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with Myalgic Encephalomyelitis.
    Dr Neil Abbot, Director of Operations, ME Research UK; Hon Research Fellow, Department of Medicine, University of Dundee, 29th August 2008)

    http://meagenda.wordpress.com/2009/...ovided-for-jr-margaret-williams-22-july-2009/
  4. Wildcat

    Wildcat Senior Member

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    'Some Concerns about the National Institute for Health & Clinical Excellence (NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and Management of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis in Adults and Children'

    Margaret Williams
    (Nominated Respondent with The 25% ME Group for the Severely Affected)

    19th October 2006


    http://www.meactionuk.org.uk/Concerns_re_NICE_Draft.htm
  5. Firestormm

    Firestormm Guest

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    Wildcat - you appear to have gone a tad OTT from my comment. I simply meant that they were able to diagnose 50-60% of patients as having CFS/ME and reject the remainder hopefully affording them a better chance of treatment. I do have faith in the ability of medical professionals in general of course I do. That they might lack specialist knowledge and are poorly guided inadequately resourced is a given. Methinks you have taken my wee comment out of context. This thread is not about NICE guidelines for CFS/ME. We were talking about Alternate Diagnoses. But thanks anyway.
  6. Wildcat

    Wildcat Senior Member

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    The NICE Guidelines critisism I posted is entirely relevent to the issue of alternative diagnoses. By the way, my posts were for the informing of all readers of this thread, who may not have been aware of the great quantities of material written in critique of the NICE Guidelines, and so may be under the impression that the NICE Guidelines are actually for our benefit.
  7. rlc

    rlc Senior Member

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    Hi firestormm, although it is good that these specialists are able to find these alternative diagnoses for these patients, the results I find deeply disturbing from the point of view that the majority of the missed diagnoses found are not ones that specialist services should be needed to make, they are common illnesses such as sleep apnoea, celiac, depression etc, that GPs should either have diagnosed or strongly suspected and then sent the patient to the relevant specialist and CFS should never have been given as a diagnosis.

    Because these studies are on large numbers of people that have been seen by a lot of different GPs it indicates that there is a very large number of GPs in different areas giving CFS diagnoses to the wrong patients.

    Although obviously we dont have exact figures, or doctors using the same methods in the same countries to find alternative diagnoses, so we cant accurately say that X% of the population with a CFS diagnosis have something else.

    But what we do have are doctors who are questioning the validity of CFS diagnoses and then investigating the patients. These UK studies say about 40% misdiagnosed. Dr Mirza by using different more up to date finds 90%. Hyde who because of the cost of his extensive investigations, tends to get wealthier patients who have already spent a lot of money on getting extra tests finds 75% misdiagnosed.

    So in the UK, USA and Canada we have evidence of a major problem going on, and something needs to be done about it. As in GPs need expert advice on what they should be ruling out and how, and be made to do this.

    This problem was always going to happen as soon as CFS was invented, because the CDC although they based CFS on what happened at Tahoe, they fudged the evidence and left out the major symptoms and the medical evidence such as Tahoe patients failing MRI scans. And then created an illness that was just a set of common symptoms found in hundreds of conditions, all the following criteria have repeated this pattern including NICE, the reality is they dont define any specific disease, and are just recipes for misdiagnosis.

    This has coincided with modern medicine falling apart due to financial problems, GPs are now paid a lot less than they used to be, which has lead to them rushing patient through at high speed so they can see more patients in a day and make more money, and hospitals are now so underfunded that they are largely only there for acute patients, if you have a chronic condition then you are highly unlikely to get properly investigated because of the cost, the money goes on people who will die in the near future if not treated.

    Basically unless you have medical insurance or are very wealthy, you will not get intensively investigated in the public system. Which can only lead to a lot of people without a proper diagnosis, and giving people a CFS diagnosis is an easy out for a busy doctor.

    Misdiagnosis is not just a problem in the CFS area; it has been shown that doctors seriously misdiagnose fatal illnesses about 20 percent of the time. So millions of patients are being treated for the wrong disease. There is an article about it here http://www.nytimes.com/2006/02/22/business/22leonhardt.html this article mentions a solution for a lot of these mistakes it is Isabel diagnostic software, information about it can be found here http://www.isabelhealthcare.com/home/product_overview/products1

    Personally I think that advances in technology like Isabel should be made compulsory for all doctors to use, there are over 10,000 different medical conditions and it is impossible for any doctor to know them all properly.

    Like I say this is largely a problem of basic medicine not being done properly, mainly at a GP level, it can be fixed and quickly if the powers that be were motivated to, but unfortunately I have no faith that they will do anything about it unless put under considerable pressure. The only thing I can think of that may lead them to make a change would be if there are any UK patients that can get the information in these studies to the press or politicians, who might want to make it into a major issue and create pressure for change.

    All the best

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