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Blood Tests: Why Test the Blood? Dr Charles Shepherd

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 6, 2014.

  1. charles shepherd

    charles shepherd

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    The MEA (evidence based) guidance in our purple booklet covering clinical assessment, differential diagnosis and management of ME/CFS is clearly aimed at health professionals (HPs) here in the UK - where the vast majority of HPs work within the National Health Service and consequently have to work to restrictions in relation to the way in which patients can be investigated and managed. I am not defending the situation and the MEA has made it very clear that we do not regard the NICE guideline on ME/CFS, with its emphasis on CBT and GET, as being fit for purpose. So I think there are real difficulties in producing guidelines on ME/CFS that are going to be acceptable on an international basis. And this is one of the reasons why guidelines produced by doctors outside the UK (e.g. Canadian Criteria) are not being endorsed for use in the UK NHS.
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  2. charles shepherd

    charles shepherd

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    Justy - I have only just joined this forum in order to respond to some of the comments.

    So please will you have a careful look at the more detailed responses I have made to people who appear to have misunderstood the purpose of this item on blood testing.

    This is a short review of all the blood tests that EVERYONE should have before a diagnosis of ME/CFS is considered or made.

    It is not intended to be a review of all the different tests relating to virology, immunology, endocrinology etc that would/might need to be arranged in view of the history given by the patient and any examination findings during the clinical assessment phase.

    These tests are all covered in considerable detail, along with differential diagnosis/misdiagnosis of ME/CFS, in the MEA purple booklet - a 52 page document that is evidence based and referenced to key research papers and clinical trials (over 300 key references). The section on differential diagnosis and investigation of someone who may have a diagnosis of ME/CFS covers 8 pages of A4.
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  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    @charles shepherd as a doctor treating ME patients in the UK do u find it frustrating being limited in testing and treatments available to you? I think it must be a hard job for you and would place u under the microscope alot from the policy makers above. Again thanks for clarifying the article, we always appreciate hearing from cfs/me doctors.

    cheers!!!
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  4. charles shepherd

    charles shepherd

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    The simple answer is that while our National Health Service can be really excellent (and I've just been with someone this morning with a tumour who is having the most exceptional terminal care from everyone involved) the restrictions imposed by NICE and our other regulatory bodies mean that many doctors are becoming reluctant to use what is termed 'clinal judgement' when it comes to how you assess and manage patients and this is being replaced by a tick box approach to medicine that obeys all the rules but may not always be in the best interest of the patient.
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  5. Eliza

    Eliza

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    well said SOC!
    I totally agree with everything.

    Everything in my immune tests screams "chronic intracellular infection".
    And I mean EVERYTHING.

    Targeted immune and gut treatment has made me go from the first 8 years of being sick (not fatigued but truly SICK as in hangover+marathon+severy flu) to remaining housebound but not sick anymore (except from a few episodes).

    This doesn't sound like "huge improvement" but to me it is. My quality of life, although still having to live in my tiny little bubble, has improved a lot. I can sit up again, I don't feel the tears dripping anymore every time I open my eyes (tears of pure physical agony). I've got my pain under control and immune modulators etc. keep that sick awful feeling away.

    I'm far from cured. Far from ...
    My CPET tests haven't improved. Neither have my neuro-cognitive tests.
    But as I said, if I keep within my boundaries, I am a human being again instead of that heap of misery I used to be. How I survived those first 8 yrs is now a riddle to me. Honest.
    Everytime I get a sick episode again, I wonder how I did it.

    Without the help of my ME/CFS MD I wouldn't be this human being again.
    Standard testing, CBT/GET, ... didn't help me one bit. On the contrary.

    Knowing about my consistent (not a one time off) immune-endocrine-gut- ... abnormalities makes me understand more about what's going on. It doesn't tell me what the "cause" is, but it does tell me in which research subgroup I don't belong and in which I do belong.
    I can keep up with research better that way and my ME/CFS MD knows what things I shouldn't do and which are worth trying.

    I paid almost everything myself and I don't regret a penny of it.
    The sad part is not everybody has the money to have this kind of elaborate testing done.
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  6. Esther12

    Esther12 Senior Member

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    It's not as if there's been a great history with CFS and 'clinical judgement' though.

    edit - actually, this is moving things OT in an already complicated thread. Ignore!
  7. Legendrew

    Legendrew Content team

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    Sorry, I believe we've got a lot of confusion going on here which appears to be leaning towards a degree of confrontation so i'll do my best to explain my position and opinions and why I hold them. Firstly I realise there are a lot of findings of viruses in ME patients and I do not dispute this as it is clearly an important finding, but as you point out we are missing that crucial, consistent pathogen that would confirm ME/CFS as of purely infectious origins. There have been many quite rigorous studies in search of this yet they always seem to draw a blank, what I'm proposing is that perhaps we're trying to square the circle in this endeavor. It's very hard to judge at which point to move onto another hypothesis without the advantage of hindsight but I think personally we've moved beyond that point already. For me the big Lipkin study is something of a last throw of the die for hunting out such a pathogen, although I fear still that if that study still fails to find such a pathogen people will simply put it down to a super reclusive ninja of a pathogen. I think the XMRV affair does clearly show what a popular hypotheis the pathogen is for ME/CFS but we should not believe it just because lots of other people do.

    As I've been going through the literature it's interesting to read these studies wherein they conclude they found no causative agent yet they always remark upon the significant degree of immune dysregulation they've observed. This is often interpreted as being proof that they've not been rigorous enough in their pathogen hunt, I personally believe that this immune dysregulation is in fact much more indicative - in the absence of that magic pathogen - of an autoimmune process. If we take a step back and look at the evidence we see a disease affecting a higher proportion of women than men, onset is often very sudden (being triggered by a plethora of viruses, stress and even vaccinations) and the disease has a waxing and waning outlook but with very low recovery numbers. To me I think the immunological findings are the most important part of any of these studies as they give many more avenues for further exploration than the finding of many seemingly unconnected viruses which as I mentioned are often similar to those found in the healthy population, a point which cannot be understated.

    I think we should steer clear of the HIV model simply because it's easy to draw comparisons that seem logical but mean very little. My example would be if I were to compare a snail and a tortoise; both have outer shells, move slowly and enjoy green leaves so it makes sense that they're closely related, you could likely tell a young child this and they'd believe you given the evidence you have but this is clearly not true. There are similarities between ME/CFS and HIV/AIDS as you point out with co-infectious being problems for both but what we are doing by drawing these comparisons is not in fact telling us anything whatsoever but simply serves to further complicate matters. I read a recent paper comparing ME/CFS and MS, while it made lots of good points it did the same as you've done by putting two diseases next to one another and pointing out the similarities and likely convinced a lot of people ME/CFS and MS were closely related but didn't gain any credence from academics because it is not truly telling us anything we do not know about ME/CFS. We are much better studying diseases in isolation, we can look over our shoulders to another condition for pointers but putting them side by side when we know little about one means it's all too easy to believe they are closely related when in all actuality they couldn't be much more separate as with the snail and tortoise.

    I understand your argument of the possibility of multiple hit and run viruses building up over time to create such an illness, I do however fail to believe this sufficiently explains the sudden onset in healthy people although it is of note that this could well represent a proportion of people diagnosed with ME/CFS. It is definitely however, as you state, worth testing for these and treating them wherever you find sufficient evidence of ongoing infections since the depressed immune system likely struggles with certain viruses which may come on following the onset of ME.

    I just wanted to say that I'm a firm believer in the idea that we should not believe anything until it is proven, for that reason I strongly disagree with your point that there is no evidence to the contrary as being a good enough reason to believe a pathogen may be at the heart of the disease. Infections and the agents which cause them are very complicated things as you say, i'd go as far as to say very interesting - just a shame they target us!

    I think this underlines why it is so important that we have such rigorous studies trying to find any pathogens in patients, we do hoever have had quite a few of these done now and as i've mentioned previously they seem to draw a blank. My main point is that perhaps more time should be done investigating the immune dysfunction found in patients than hunting for pathogens - wherever this leads I think it is a better avenue going forwards than continuing as we are. Both can co-exist as avenues, I just believe we should take a step back and explore a few new hypotheses.


    I think you've hit the nail on the head there with not tying thing down to what is or isn't the cause. It is for this reason it frustrates me so much to see people in general talking of nothing but pathogens as a potential cause of ME/CFS. This has been the leading hypothesis for too long in my opinion and i'd love to see a wider spectrum of research taking place aside from pathogens, which I think deserves to continue being researched, just not exclusively!

    Reading back my comment about people wanting it to be a virus I believe I've worded my meaning wrongly. What i mean to say is that people understand why a virus could explain their symptoms. Everyone is familiar with viruses to some degree whether it be through having flu or learning about it in biology class. That experience makes the virus a well known cause of disease which is why when discussed as a cause of a chronic condition, many people will believe it because "they've never felt as bad since they had the flu". I'm not sure my wording here is much better but my point I attempted to make is that while people don't want to be ill or have a disease it's easy to understand that a virus can cause you to be very ill and in a chronic condition people are often looking to find out why. If doctors cannot provide the answers then people often look to other diseases they've experienced and the internet - both of can lead to people believing a virus is the cause given that most people will have experienced a virus and the leading hypothesis is without a doubt a virus.


    It's interesting to hear just how many of your family have been effected by ME/CFS, it's clear why you have strong opinions regarding the condition! It does make me wonder about the genetic component of the disease. From my own view this could imply your family has a predisposition towards the immune dysfunction involved in ME. I think this pattern is seen a lot in diseases of autoimmune origin, although I have heard of families also having greater susceptibility to certain viruses - things are never easy to interpret unfortunately. I hope I've managed to sort out a few points there anyway. I think we can both agree to disagree on certain points but the thing I believe we can agree on I think is the importance of rigorous immunological testing aside from pathogen testing in further clinical trials to try to gleam a better understanding of why things have gone so awry.
    Last edited: Feb 8, 2014
  8. tatt

    tatt

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    @charles shepherd

    I wonder if Dr Shepherd has any advice for a UK patient who has found it extremely difficult to get these tests before diagnosis (and yes I have seen a so-called ME specialist, I managed to get a few more then) and when results are slightly abnormal does not have any further investigation because "that wouldn't explain your symptoms" or "that's to be expected at your age". Obviously by the nature of ME you aren't normally feeling well enough to argue the toss.

    I'd also like to ask your view on the reliability of these tests since eg liver function tests are, I understand, only about 60% reliable. Shouldn't ME patients all be getting a fibroscan given the similarity of ME symptoms and those of liver disease?

    Would you care to say more about low calcium levels? I had lowish calcium and vitamin D but as usual my doctors dont consider it necessary to investigate further. If you once get a diagnosis of ME in the UK it's a recipe for poor medical care thereafter.
    Last edited by a moderator: Feb 10, 2014
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  9. tatt

    tatt

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    @charles shepherd

    sorry - forgot can you comment specifically on the effect of low vitamin D on liver function tests? Many people with ME are vitamin D deficient.
    Last edited by a moderator: Feb 10, 2014
  10. Esther12

    Esther12 Senior Member

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    PS: Thanks to PR and Shepherd for the article.

    I do often worry that some of the blood tests people mention on here seem potentially dodgy, and it would be good if there was a bit more easy to access information on which tests had good evidence of their value, which were experimental (with it being important that patients be made aware of this) but potentially of some value, and which had evidence indicating that they were not of value.

    I guess that there are always new things emerging, both of possible value and stuff that's almost certainly quackery, so it would be hard to keep anything up to date.
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  11. Dr Shepherd the program you refer to was not very well researched and yes it is quite possible as you must know, for a person to test positive for Lyme Disease and be without symptoms, as it is with other illnesses that can remain in our bodies without causing symptoms.

    In order to conduct proper trials of test performance it would need many more samples to be looked at under proper laboratory conditions which maybe the direction Public Health England decide to go as they have been in talks with IgeneX.

    Currently as the program did highlight there is no test available that can show a current active Borrelia (Lyme Disease) infection. The tests that NHS currently use miss many cases they are antibody tests and there are many reasons why we can or do not produce the antibodies that are being tested for. Most doctors should realise that as in other health areas antibody testing is often problematic. Porton Down who are currently the testing centre in UK say that we need better testing and are looking at other options.

    Public Health England and Dept of Health were involved with the James Lind Alliance Research which found many uncertainties in diagnosis and treatment of Lyme Disease now documented on NHS DUETS database http://www.library.nhs.uk/duets/SearchResults.aspx?catID=15587&tabID=296 this will eventually result in current guidance on PHE website being updated, which could be a two year process according to PHE. Meanwhile the best available information for patients and clinicians and the results of James Lind Alliance research can be found on http://www.lymediseaseaction.org.uk/

    My ME/CFS turned out to be Lyme Disease it was a chance course of antibiotics that improved my health significantly and led my GP to suspect Lyme Disease my history and clinical picture supported that and my response to antibiotics meant that over a long period taking oral antibiotics I recovered my health.
    justy likes this.
  12. roxie60

    roxie60 Senior Member

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    That is why we go to doctors, we expect not only are they going to evaluate history, tests but will offer 'clinical judgement'. If doctors are forced to follow insurance company and government restrictive guidelines to arrive at cookie cutter diagnoses then why do we need doctors anymore. Maybe that is the goal. In the USA clinical judgement by doctors for those with chronic illness has gone the way of the dodo bird, nearly extinct and any doctor trying to be a doctor gets beat up by the corporations (medical and insurance corporations).

    If they are are measured by disappointment and aggravation then the USA medical paradigm will pass with flying colors. If they are measured by successful recovery of their patients the US medical field gets a big fat 'F'. I know the operating environments in other countries are just as difficult but when did it become ok for doctors to be told how to test/treat their patients, when did it become ok to not figure out what is wrong and pass a patient around til they give up and die.

    It is criminal what is happening to hundreds of thousands of people suffering, trying to get answers and being misdiagnosed, mislead, drained of financial resources and even in some cases out right abused. If we could measure the loses of the individuals (financial, relationships, health, quality of life, careers) it would reach to the heavens not to mention the loss of productivity to society because we can not function.

    I wish I had the answers but it is an indictment of those in power (governments, medical organizations and insurance companies) who care not about getting to the truth of what is making people sick, rather toss them to the gutter if they cost too much to treat. After 10 years of trying to find answers to my own multisystem illness (now it looks likely it is Lyme but still not good test) I feel I am living in the dark ages not the 21st century.

    Even now I am overwhelmed because it has become my responsibility to try and educate myself and figure out what tests I should have done to try and have empirical evidence of Lyme infection so I can keep disability (that is another back hole of tasks). We have to expend energy just trying to generally move forward, trying not to lose hope for an answer and cure.
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  13. charles shepherd

    charles shepherd

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    To answer your questions:

    1: there should not be any difficulty in getting ALL the routine blood tests mentioned in the MEA leaflet done in primary care/by a GP. This is an essential part of the clinical assessment and diagnosis of someone who may have ME/CFS.

    2: minor abnormalities can occur in blood tests and are often nothing to worry about. A patient can often be reassured if the abnormality is no longer present if the test is repeated - a very simple thing to do.

    3: if a minor abnormality is present, or persists, this should also be viewed as a warning sign to say that another explanation may be possible. This may need to be followed up by taking a more detailed clinical history and/or arranging further tests,

    4: liver function tests should be both sensitive and accurate. Again, if minor abnormalities are present, this could be a clue that an underlying liver disease - e.g. hepatitis C, primary biliary cirrhosis, 'fatty liver' - is causing an ME/CFS like illness. The same logic applies to abnormalities in calcium levels.

    5: there is no reason why ALL people with a possible diagnosis of ME/CFS should have a liver scan.

    6: some people with ME/CFS have vitamin D deficiency and there is a good case for people at increased risk (especially those who are housebound and do not have exposure to sunlight) to take vitamin D supplementation under medical supervision. We have an MEA information sheet covering vitamin D deficiency in relation to ME/CFS.
  14. charles shepherd

    charles shepherd

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    Information on Lyme disease testing from MEA purple booklet:

    Lyme disease
    Doctors have recently been warned by the Medical Defence Union about the growing incidence of Lyme disease – an infection caused by Borrelia burgdorferi that is transmitted to humans by tick bites, although some people do not recall a bite taking place.

    Infected ticks are more common in woodland, heathland and moorland in areas such as Exmoor, Lake District, New Forest, Yorkshire moors and Scottish Highlands.

    The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans), which spreads out from the bite, usually after about 5-15 days. Other early symptoms can include lymphadenopathy and a flu-like illness. Laboratory evidence should always be sought if the diagnosis seems possible. Diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neuro-logical complications.

    Analysis of cerebrospinal fluid from cases of early disseminated Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Angel et al 2012).

    Misdiagnosis of Lyme disease: There are also well documented concerns about over-diagnosis and inappropriate management of Lyme disease. A retrospective case note study of 115 adults with suspected Lyme disease who were referred to a UK infectious diseases clinic found that only a minority had Lyme disease; one third had ME/CFS; and no specific diagnosis was made in a further third (Cottle et al 2012). At least 53 unnecessary courses of antibiotics had been prescribed.

    Lyme disease diagnostic services
    The Autumn 2009 issue of the Chief Medical Officer’s Update contained a warning about the accuracy of some of the private (i.e. non-NHS) tests for Lyme Disease and consequent dangers of misdiagnosis. The full statement can be found on the MEA website: www.meassociation.org.uk/ ?p=697

    As of 1st June 2012, the Health Protection Agency’s Lyme diagnostic service is provided by the Rare and Imported Pathogens Laboratory (RIPL), HPA Porton Down.

    Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirmatory Western blot (separate IgG and IgM). PCR is also available and may be useful in testing joint fluid and biopsies of rashes. It has poor sensitivity on CSF and antibody detection is the preferred first line test on CSF. PCR is not usually performed on blood as the duration of bacteraemia is short.

    RIPL also has capacity to perform further testing and tests for diseases related to Lyme. Contact RIPL to discuss if required.

    RIPL clinical staff are available to discuss cases with medical professionals during working hours on 01980 612348 or by email referral to Lyme.RIPL@hpa.org.uk. There is no clinic at HPA Porton and they are unable to see patients or to give telephone advice directly to members of the public.

    RIPL website:
    www.hpa.org.uk/Topics/InfectiousDiseases/ InfectionsAZ/LymeDisease/
    This gives details of where patients can be tested for Lyme disease on the NHS.

    The ME Association has a patient information on Lyme Disease written by consultant microbiologist Dr Darrel Ho-Yen
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  15. tatt

    tatt

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    1. Shouldn't be a problem but was - short of making a formal complaint and/or changing gp any suggestions? Another gp in the practice misdiagnosed an allergic reaction as a viral rash (despite me saying it was an allergic reaction, confirmed eventually by a dermatologist) so a different gp in the practice not likely to be any better.

    2. No repeat testing offered.

    3. my blood tests were fine, fibroscan suggest a problem. I think I'll disagree with you on the need for fibroscan. Btw I drink about 3 units of alcohol a week on average.

    Guidance is only any use if gps follow it
  16. barbc56

    barbc56 Senior Member

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    Dr. Shepard, I have been following this thread but for a myriad of reasons, I haven't been able to post much on PR as of late. I want to thank you for writing this article. I have found it to be very helpful.

    I do have a question. Did you include a test for ferritin? As I understand it, my cbc count is fine and low ferritin has many of the same symptoms as anemia.. I might have missed this in the article, as I only have access to my crummy tablet atm and can't always zoom.

    The reason I ask this is because I have had very low ferritin levels in the past. My sleep doctor sent me to a hematologist and I had an all day infusion of iron. He always gets a level for ferritin, especially for his patients with RLS as the level needs to be higher. While this procedure helped with my RLS, it only brought a small improvement in my ME/CFS/FM symptoms but at least I have the assurance that my ferritin level is now normal.

    Would this test be considered only if you have symptoms of anemia but a normal cbc? I would think this would also apply for a sleep study?

    My personal choice is to get the tests that have scientific backup and it's sometimes difficult to sort out these tests. While these tests may prove to eventually be valid, we simply don't know with our current state of medical knowledge. I want tests that are medically valid. If they aren't, IMPO, it only muddies the waters and makes it more difficult in the long run to sort out what is medically warranted to improve our health. I also want tests that are of good quality (unlike the PACE trial) and based on prior plausibility.

    I kind of veered off topic towards the last but I am strongly committed to the above principle.

    Again, thank you.
    Barb.
  17. Leopardtail

    Leopardtail Senior Member

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    L.

    several points however remain. Firstly there are tests such as MTHFR polymorphisms that can produce stunning improvements in severe fatiguing illness. Test showing defects in B-Vitamin metabolism in general can show similar use. The problem is that medics dismiss what they do not understand and much of B vitamin metabolism is beyond their expertise. While I would not say that every test is money well spent for every person with CFS (including Thyroid tests) they should be given adequate consideration, not dismissed out of hand.

    Further with respect to 'infective agents'. Infection when persisting can elevate Thyroid and Glucocorticoid hormones and make a patient feel truly awful. In combination with other treatment anti-viral, anti-biotic treatments can be vital especially when compromised immunity is present.

    Dr Sheppard is far too 'all or nothing' and also belittle's many treatments that are highly effective for many of us.
  18. tatt

    tatt

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    Well I agree with him to some extent - no point in tests that don't improve management of the condition. We need more research on the treatments that seem promising then tests to see who would benefit from them. However I disagree that the current range of tests is enough. Personally I'd like a cortisol test, a test for POTS and a B12 test included with thryoid antibody tests and mitocondrial antibody tests put through clinical trials. Everyone with ME should have vitamin D levels tested. If you can afford it get a fibroscan - and if it shows a problem treat yourself with NAC. Most liver problems they advise diet changes and exercise and anyone with ME who hasn't changed heir diet and excluded alcohol should try it for at least 6 weeks.

    People with even slightly abnormal results should have further testing because the "reassurance" is rubbish. If you don't know what is causing ME how can you say even small abnormalities don't matter? I treat my "small abnormalities" and my health has improved.
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  19. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Could people please ensure that they have read all Dr Shepherd's messages in this thread before criticising him, as it seems that he is still being misinterpreted. Message #28 on this page answers several recent criticisms.
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  20. Firestormm

    Firestormm Senior Member

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