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Blood Tests: Why Test the Blood? Dr Charles Shepherd

The Medical Advisor to the ME Association, Dr Charles Shepherd, writes about the importance of blood testing prior to receiving a diagnosis, explains what each test means including for children, and considers when new tests might be necessary…

Blood Tests - NHSHuman blood contains red cells, white cells, platelets and plasma. Red blood cells carry oxygen around the body – so a deficiency or abnormality will probably cause anaemia.

White blood cells help to fight off infections and respond to allergies. They are sub-divided into cells called basophils, eosinophils, lymphocytes and neutrophils – each with a slightly different function.

A rise in the overall number of white cells usually indicates the presence of infection or inflammation somewhere in the body. A decrease in the white cell count may mean that your body isn’t so good at fighting infections. Causes of a low white cell count include drug side-effects and diseases involving the bone marrow, where white blood cells are made.

Platelets help to form blood clots and prevent bleeding. So a platelet deficiency can cause a problem with excessive or prolonged bleeding from a wound site.

Human blood also contains a wide variety of immune system products (e.g. antibodies), enzymes, hormones and proteins that are made or excreted by various organs and tissues in the body.

Laboratory analysis of a small sample of blood can, therefore, reveal a great deal of basic information about your state of health and the function of various organ systems.

Is there a diagnostic test for ME/CFS?

The simple answer is no. An ‘ME blood test’ seems unlikely to be developed in the foreseeable future.

Minor blood abnormalities can occur in ME/CFS but none of them are sufficiently consistent or robust to turn them into diagnostic markers.

When we understand more about the basic underlying pathology of ME/CFS, possibly as a result of new research taking place at the ME Biobank, it is possible that a diagnostic test will then emerge.

Blood tests and ME/CFS

Everyone should have a number of routine blood tests before a diagnosis of ME/CFS is confirmed. This is to help rule out conditions that can also produce fatigue and other ME/CFS-like symptoms. The routine tests that make up this list are:

  • Full blood count: red cells, white cells, platelets etc
  • ESR and CRP (C-reactive protein)
  • Biochemistry screen – including electrolytes, calcium and urea
  • Blood glucose – for diabetes
  • Coeliac disease screening – IgA anti-tissue transglutaminase antibodies
  • Creatine kinase – for muscle disease
  • Creatinine – for kidney function
  • Liver function tests
  • Thyroid function tests
  • Adrenal function – 9am cortisol

Depending on the results and/or the type of symptoms that are occurring, a number of other tests may be also necessary. These include tests that check for:

  • Infections such as HIV, hepatitis B or C, Lyme disease
  • Rheumatic conditions such as lupus/SLE
  • Vitamin D deficiency – which can occur in people with ME/CFS who lack exposure to sunlight

There are also a number of private (i.e .non-NHS) tests that are promoted to people with ME/CFS. These can be quite expensive and current medical consensus is that most of these tests are unproven or unnecessary as they are not helpful in either the diagnosis or management of ME/CFS.

Two tests that fall into this group are the RNAse-L test (for antiviral activity) and CFS urinary markers (CFSUMs) – both of which have been assessed in research studies funded by the ME Association.

Blood tests and children

Doctors are more reluctant to carry out extensive testing on children. Even so, it is also important to rule out other possible explanations before the diagnosis is confirmed in a child. There are also some other blood tests that may be recommended in the case of children and adolescents.

These include:

  • Viral studies that could help to confirm a recent or current infection with Epstein-Barr virus (glandular fever).
  • Tests for other types of infection which can sometimes cause an ME/CFS-like illness in children. Examples include Lyme disease and toxoplasmosis.
  • Serum ferritin level – a measure of iron status in the body.
  • Tests for some of the rare disorders of childhood that can produce fatigue.

The results – what do they mean?

After a blood sample is taken by your GP, it is sent to the hospital laboratory for analysis in a machine. The results should be back within a few days.

Each test will have a numerical result giving the level in the blood. If this measurement falls within what is called the normal range, there is usually nothing to worry about.

In some cases, an abnormality occurs when the result is higher than normal. If it’s just outside the normal range, this may be acceptable and all that needs to be done is for the test to be repeated after an interval.

Results that are significantly higher than normal usually indicate the need for further assessment and/or investigation. Results that are significantly lower than normal are also important – an example being a low level of thyroid hormone or haemoglobin.

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When should blood tests be repeated?

Once a diagnosis of ME/CFS has been confirmed, further investigation isn’t usually necessary. But it’s worth noting that new symptoms shouldn’t just be automatically linked to ME/CFS as they may need to be investigated.

If ME/CFS persists, especially if you are over 40, there is a strong case for repeating some of the routine tests, such as thyroid function, every few years. This is because conditions such as diabetes and hypothyroidism often appear very gradually – so they can be easily missed when you already have ME/CFS.

Specific tests

Full blood count and differential

Checks the level of haemoglobin, white blood cells and platelets as well as providing information on the size of the red blood cells and a breakdown of the white count into its components.

Anaemia is not part of ME/CFS and if present must be investigated further – as it always has a cause. One of the commonest situations is iron deficiency due to bleeding (sometimes menstrual) but a number of conditions with ME/CFS-like symptoms can also cause anaemia. These include coeliac disease and low thyroid function (hypothyroidism).

Anaemia can also be caused by dietary deficiencies and is sometimes found in teenage girls with ME/CFS who do not eat enough iron-containing foods.

Minor abnormalities in the white cell count – such as what are called atypical lymphocytes – are sometimes found in ME/CFS, especially in the very early stages when the illness follows a viral infection such as glandular fever. More persistent or significant abnormalities in the white cell count will need to be investigated, especially when accompanied by physical signs such as enlarged glands.

The platelet count should be normal in ME/CFS.

Biochemistry screen

Checks the level of salts/electrolytes in the blood (ie sodium, potassium), calcium and urea.

An increase or decrease in the level of calcium suggests that there may be another cause for symptoms. One condition that can cause a raised level of calcium is sarcoidosis – this would need to be considered if you also have chest symptoms. Thyroid disease can also raise the level of calcium in the blood.

The levels of sodium and potassium provide vital clues as to how your body is dealing with fluid load and how your kidneys are functioning. An increased level of sodium could indicate lack of water intake (dehydration) or an unusual hormonal condition called diabetes insipidus.

A decreased level of sodium could indicate an excessive water intake or Addison’s disease, where there is a serious fall in the output of the hormone cortisol. A decrease in the level of potassium could be caused by drugs (including diuretics, liquorice and carbenoxalone), diabetes, kidney problems or malabsorption of potassium in the gut.

The level of blood urea gives a rough guide to kidney function.

Blood glucose

A raised level of blood glucose indicates that you may have diabetes – an illness that can come gradually with increasing fatigue and urinary symptoms. If so, more specific tests will probably need to be arranged.

Creatine kinase (CK)

This is an enzyme that passes into the blood from damaged or inflamed muscle. Although CK is usually within normal limits in ME/CFS, there are occasional reports where it is raised. Any significant increase in the level of CK will need to be investigated,possibly with a muscle biopsy (where a small sample of muscle is removed for examination under the microscope) to exclude a primary muscle disease.

ESR and/or CRP (C-reactive protein)

These are two tests that simply pick up whether there is inflammation or infection somewhere in the body. Results of these tests should be normal in people with ME/CFS. If raised, further investigations are likely to be necessary.

Hormone function tests

The only hormone levels that need to be routinely checked in people with ME/CFS are thyroid and adrenal gland function – where cortisol is produced. If symptoms, or electrolyte results, are suggestive of Addison’s disease – a very rare condition where the adrenal glands produce dangerously low levels of cortisol – this will require further hospital-based tests.

In some circumstances, other hormones may need investigation. One possible example is serum oestradiol and FSH levels in women who have a significant exacerbation of symptoms at period time. This is because they may benefit from treatment with hormonal supplementation if levels are low (reference: Studd J and Panay M. Chronic fatigue syndrome. Lancet, 1996, 348, 1384).

Immune function tests

The white blood count gives a rough idea of how your immune system is functioning. There are also specialised tests of immune system function that show how the various different components are functioning. Although abnormalities do quite often occur in ME/CFS involving different components – eg autoantibodies, cytokines, immunoglobulin levels, natural killer cells – the changes are not sufficiently consistent to be helpful in diagnosis. And, in most situations, the results are not going to affect the management of your illness. So a more comprehensive investigation of the immune system is not normally required.

Liver function tests

These measure the level of various chemicals, proteins and enzymes produced in the liver.

Minor abnormalities can occur in ME/CFS for a number of reasons. These include the type of infection that triggered the illness and drugs (eg antidepressants) or herbal remedies that affect liver function. A benign condition of the liver called Gilbert’s syndrome is more common in ME/CFS and this can cause an intermittent rise in the level of bilirubin – a pigment that causes jaundice. And a condition called primary biliary cirrhosis, which can cause debilitating fatigue, should be considered when liver function is abnormal – especially where someone also complains of skin itching.

blood-20745_1280Screening for coeliac disease

Anyone with irritable bowel-type symptoms – ie abdominal pain, bloating, changes in bowel habit – must be properly checked for coeliac disease as this is a fairly common disorder that has a number of symptoms in common with ME/CFS. An antibody screening test (ie IgA antitissue transglutaminase) is commonly used.

If the result suggests coeliac disease you may then be asked to have a biopsy of the gut lining. Coeliac disease symptoms, including the fatigue, often respond very well to a gluten-free diet.

Screening for infection

Antibodies, which are part of the body’s immune system response to infection, often remain in the blood fo a period of time after the acute infection. So looking for antibodies to specific infections can provide clues as to what triggered your ME/CFS.

Unfortunately, this sort of information isn’t usually of any help in diagnosing or managing ME/CFS – so most doctors believe that looking for antibodies to past infections isn’t normally of any practical value. And these type of antibodies can be present in perfectly healthy people.

Even so, there are a number of specific and treatable infections that do sometimes need to be checked for if your clinical history suggests that one of them could be involved. Examples include hepatitis B and C, HIV, Lyme disease and Q fever.

Autoantibodies are antibodies that the body sometimes produces against its own tissues and this type of abnormal immune system response can sometimes follow an infection. This may explain why low levels of autoantibodies are sometimes found in people with ME/CFS.

Screening for rheumatic conditions

ME/CFS can produce pain in the joints. If this is more pronounced, or accompanied by inflammation, swelling or deformity, you will probably need to be investigated for some of the rheumatic diseases that can produce fatigue. This will involve immunological tests that are positive in conditions like lupus/SLE.

Thyroid function tests

As both underactivity (hypothyroidism) and overactivity (hyperthyroidism) can produce an ME/CFS-like illness, testing thyroid function is essential before a diagnosis of ME/CFS is confirmed.

The most sensitive test of thyroid function involves measuring TSH – thyroid stimulating hormone. As the name suggests, this is a hormone (produced in the brain) whose function is to stimulate thyroid hormone (thyroxine) production.

If thyroxine output is low then the TSH level rises. If too much thyroxine is being produced, then the TSH level falls. Thyroid hormones that are measured in the blood are T3 (occasionally) and T4.

Some private doctors prescribe thyroid hormones to patients with ME/CFS who have normal thyroid function test results. However, this is inappropriate and potentially dangerous because even small extra amounts of thyroxine can trigger serious heart rhythm disturbances.

Disclaimer:

Medical information contained in this article is not intended to be a substitute for medical advice or treatment from your own doctor.

The ME Association recommends that you always consult with your own doctor or healthcare professional about any specific problem.

They further recommend that any medical information provided by the MEA is, where appropriate, shown to and discussed with your doctor.

The narrative for this article first appeared in the current edition of ‘ME Essential’ (Winter 2013-14), and has been reproduced here with kind permission of The ME Association.

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{ 59 comments… add one }

  • roxie60 February 19, 2014, 8:16 am
    charles shepherd

    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.

    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.

  • charles shepherd February 20, 2014, 7:42 pm
    tatt

    @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.

    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.

  • charles shepherd February 20, 2014, 7:48 pm
    Marilyn60
    charles shepherd

    Before anyone else misinterprets or misunderstands what this MEA information on blood testing is for:

    It was produced as a very basic MEA magazine item to cover ALL the routine blood tests that EVERYONE should normally have here in the UK before a diagnosis of ME/CFS is considered or made.

    It is NOT designed to be a comprehensive list of all the blood tests that may need to be arranged – eg Lyme disease testing; neuroendocrine testing for Addison’s disease, pituitary disorders; further investigation of liver function if minor abnormalities are found; serum hydroxyvitamin D in those at risk of vitamin D deficiency; comprehensive autoimmune disease screen. This list is long and will depend on the history given by the patient and the examination findings obtained during a proper clinical assessment. There just wasn’t the space to include all of these tests, along with when they could/should be used, in ME Essential.

    However, all of these additional tests are all covered in considerable detail in the sections (7 pages of A4) covering differential diagnosis, clinical assessment and investigations in the MEA purple booklet:

    http://www.meassociation.org.uk/2013/06/available-now-–-latest-edition-of-the-me-association-clinical-practice-booklet/

    Regarding the use of thyroxine: this has to prescribed with great caution in people who have/may have adrenal insufficiency/hypocortisolaemia (as may be the case in ME/CFS) and should NOT be prescribed in such circumstances in people who have normal thyroid function tests.

    Regarding tests for Lyme disease: almost a whole page of the MEA purple booklet is given over to Lyme disease, including NHS and private laboratory testing. Some of the commercial tests are not reliable and I would suggest that people have a look at a recent BBC documentary when it appears on BBC iplayer:

    http://www.bbc.co.uk/programmes/b03sqyp2

    ……where a perfectly healthy BBC reporter I know was tested ? positive using a private sector laboratory.

    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.

    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: http://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:
    http://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

  • tatt February 22, 2014, 9:04 pm
    charles shepherd

    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.

    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

  • barbc56 February 23, 2014, 3:48 am

    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.

  • Leopardtail March 27, 2014, 1:05 am
    Legendrew
    SOC

    I might agree with you if it weren't for statements like this:

    [my bolding and underlining]

    Clearly he's not just talking about diagnosis, but claiming further tests are not useful in the management of ME/CFS.

    Well, as odd as it sounds, tests themselves are of little use in the management of a disease if you're not completely sure of what you're looking for. There are examples to the contrary of this such as measuring antibodies and TSH (among the other thyroid hormones) which do help in the management through allowing for the right dosage of treatment, however many of the tests used by some physicians for ME/CFS patients do nothing to aid disease management other than informing of the ongoing problem which, while very helpful to researchers in understanding the disease mechanisms at play, are very hard to transfer into use disease management.

    I realise many will be quick to point out testing for viruses and antivirals that lie therein but I don't prescribe to the notion that ME/CFS is of infectious origins, perhaps triggered but certainly in my opinion not perpetuated. My analogy that I feel I refer too far too often is that of a wildfire in a forest; a virus or other infectious agent serves as a spark which sets ablaze the forest but after this event there is little point in trying to track down the spark given that it is more than likely an impossible task as the spark has long since been absent, besides which the blaze is of much greater concern!

    I fear I may have lost my point somewhat but my takeaway message I suppose it that we simply know too little at this point for the any testing to be of great use in clinical practice given that we don't even know what to look for, that's not to say however that none should be done at all – that of course comes down to the decision of the patient and doctor in question.

    vamah

    I have to agree, although I think the list of tests could be longer. I think so often a person is labeled with cfs and then can't get tests or treatment because so many doctors treat it as a psychological illness. Also, since it probably has different triggers for different people, it is important to try and find that underlying trigger. That is the point where you start treating the illness instead of just symptoms.

    I agree with your first point regarding the stigma a diagnosis of ME brings and the problems that arise therein with further testing when often it is warranted but I think all too often we get wrapped up in finding what triggers illness. This is an important question for researchers trying to understand disease mechanisms however for a patient and doctor the cause is of little help. If someone catches a virus or breaks a leg there is little point in trying to find out the circumstances under which such events happened, what's important is the steps you take in the present. I think with chronic diseases we all have a tendency, myself included, to mull over the "what ifs" when really we should be looking at the present a little more.

    I do however think certain diseases and the testing necessary to rule them out was missed from this list.

    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.

  • tatt March 27, 2014, 9:04 am

    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.

  • MeSci March 27, 2014, 10:51 am

    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.

  • Firestormm March 27, 2014, 11:46 am
    MeSci

    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.

    Direct link: http://forums.phoenixrising.me/inde…-dr-charles-shepherd.28065/page-2#post-428009