Blood Tests: Why Test the Blood? Dr Charles Shepherd

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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…

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Human 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.

Detailed information on the use of all of these blood tests and their role in ME/CFS can be found in the Investigations section of ‘ME/CFS An Exploration of the Key Clinical Issues‘, written by Dr Charles Shepherd and Consultant Neurologist, Dr Abhijit Chaudhuri, and available from the ME Association.

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If you are resident in the UK you might also like to be aware of the campaign that has allowed thousands of free copies of this valued resource to be sent to UK doctors and medical libraries, and to know that patients are still able to nominate recipients.

To read more about the campaign, and to learn how to nominate a doctor, please click the image for more information. The booklet (and also this article – which is now available in leaflet form) – can be ordered by completing the order form: HERE.

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.

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Screening 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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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

I disagree. The pathogen I suspect does not go away but sadly there is no test for it.

 

PS: For some reason I'm surprised to have Shepherd contribute an article here. I thought we were a weird backwater.

Welcome to PR!

 

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, ...

You can believe what you want and not get tests on yourself as a consequence. The fact is that multiple highly respected researchers are finding multiple ongoing known infections in PWME. Of course you'll never find them if you don't test for them.

Immune testing (considered unnecessary by Shepard) is also indicating ongoing currently unidentified pathogens (as @Iansbergen mentioned) in some patients. Immune testing has shown immune dysfunction that can benefit from immune modulators/treatments. Of course we'd never know that if we did "unnecessary" immune testing, either.

So fine, don't get pathogen or immune testing if you don't want to believe ME/CFS is of infectious origin, but do the rest of us a favor and don't suggest that testing isn't beneficial for PWME.

 

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.



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.

So your theory of not treating Infections because we dont know the real cause is like saying hiv they shouldn't treat coinfections as they arent the main issue. U would have alot of hiv people die of cmv, mycoplasma etc.

 

Tell me,
Everybody knows traces of borellia dissapear from the blood as soon as 48 hours after infection. NK cells and their function , cd57 counts together with some other immune markers lead the way to possible lyme. Spinal taps can add to this diagnosis as do symptoms of course.

I don't think that this is right.

I've tended to assume that blood test are, at the moment, only valuable for identifying alternative diagnoses or research. I've not seen any good evidence to the contrary yet.

Esther12,

"blood tests are only valuable for identifying altnerative diagnoses and research"

Ok, so when you don't do any additional testing, how will you know your diagnosis is correct?

And yes, testing is valuable for research, but also for the clinician treating you.
If he or she doesn't look into your immune problems, endocrine problems, viral load, bacterial load, gut dysbiosis, exercise capacity, ... any further than what is suggested in this article, how will he or she be able to handle you and your disease properly?

An active viral infection doesn't mean you don't have ME. It's typical for ME.
But ... this viral infection could explain your immune problem or vice versa.
Should you put such patients on a treadmill and let them exhaust themselves knowing they have an ongoing infection with high cytokin loads or should you be very very cautious?

I would have thought any MD would want to know this kind of impartant info in order to help his patient and not send him or her totally off the cliff and into bed for many years to come.

 

If every doctor followed the above than there wouldnt be any research into cfs and no treatments at all for cfs/me, most would balk at symptomatic treatment as well. A good forward thinking doc is hard to find also.

I agree with a lot of what you say, but I don't think that what doctors do (or don't do) has much influence on what researchers do (or don't do). More sadly perhaps (although clinical data are potentially invaluable research info), research findings take a very long time to be translated into clinical practice. They are two very different lines of work.

 

I agree with a lot of what you say, but I don't think that what doctors do (or don't do) has much influence on what researchers do (or don't do). More sadly perhaps (although clinical data are potentially invaluable research info), research findings take a very long time to be translated into clinical practice. They are two very different lines of work.

I see where your coming from but the research we have going on now is mostly done by gp's with an interest in cfs/me and then go into research, probably due to the lack of efforts from other research avenues. Dr k, Dr P, klimas, kdm etc
i guess its a 2 way street, its gp's generally in contact with patients and where it all begins, generally researcher dont see patients first up but stimulated to research by doctors trying to treat these patients??

Its a can of worms?? but the dr/researchers above are using tests to help them diagnose and treat cfs/me. We are only just beginning to see there efforts to stimulate more researchers.

 

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.

 

Thanks for clarifying. A hot topic here

 

You can believe what you want and not get tests on yourself as a consequence. The fact is that multiple highly respected researchers are finding multiple ongoing known infections in PWME. Of course you'll never find them if you don't test for them.

Immune testing (considered unnecessary by Shepard) is also indicating ongoing currently unidentified pathogens (as @Iansbergen mentioned) in some patients. Immune testing has shown immune dysfunction that can benefit from immune modulators/treatments. Of course we'd never know that if we did "unnecessary" immune testing, either.

So fine, don't get pathogen or immune testing if you don't want to believe ME/CFS is of infectious origin, but do the rest of us a favor and don't suggest that testing isn't beneficial for PWME.

I disagree that immune testing implies ongoing unidentified pathogens. I fear I'm fighting against a lot of years of belief of ME/CFS as being of infectious origin but I believe the immune activation in the absence of any consistent pathogen findings over a 20+ year period means we should perhaps be looking more towards a disease of autoimmune pathology rather than of infectious. Immune testing is I believe helpful in showing that there is something not working as it should but it's a silly jump in my opinion to automatically assuming that something is a pathogen that has evaded detection for so long. I believe unfortunately that people "want" there to be a virus at the heart of the conditions purely because it is a simple explanation but that's not to say it's the right one. Perhaps the hunt for viruses will be looked back upon as holding back the advancement of our understanding of the condition. I also think our current understanding of the inner workings and interconnections of the immune system make it very difficult to treat immune dysfunction - I'd go as far as to say that "immune-modulators" are very unlikely to get at the heart of the condition purely because we don't yet know what in particular needs targeting, with something as complex as the immune system a shotgun approach isn't going to get you very far and could indeed make things worse. With regards to the findings of known infections, these are very often found at similar levels in the normal population, the question is why these known infections begin to cause a problem and that is likely the immune dysfunction we know appears in ME - this is very common in most diseases that cause a dysfunctional immune system and does nothing to support the notion of ME/CFS as of infectious origins.

I want to make it clear that I'm not putting down these tests and treatment, I am however saying that the clinical evidence simply isn't there to support their use hence it comes down to the opinion of the patient and doctor. Co-infectious are something frequently discussed and I do believe they play a part in some people but only as a later result of the observable immune dysfunction, which incidentally I only feel is unnecessary purely because we don't yet know how to interpret the results in, a think a similar example would be testing thyroid hormone levels without having a reference range - the results are simply of no use for treatment other than giving a very broad "somethings not right". Treating these co-infections may help symptoms a little but it's not going to solve the bigger issues at the heart of the condition - just as treating co-infections in HIV/AIDS does not cure the condition overall.

 

treating co-infections in hiv reduces mortality.

Low nk function is a common finding in cfs/me, if u look at the role of nk cells they kill viral infected cells as well as cancer infected cells. Its just common sense that if apart of your immune system isnt working then infections are going to play a big part.

Also i dont think we are saying herpes viruses are the cause of cfs but occur due to the immune dysfunction. If it had no bearing then why do we see improvement of some cfsers with antivirals treatments which are backed up by improved immune/infection labs. Herpes virus reactivation is common in other illness with immune dysfunction supression. Maybe for some its a hit and run but for others many of these infections are ongoing. This brings us back to sub groups again.

 

Tell that to all the Americans on here who have access to the top M.E doctors in the states, who have been helped with managing symptoms by the results of these 'unproven' tests.


Don't even get me started on this bit:


I have read the testimony of many patients, treated by Dr Skinner (who sadly passed away recently) who have been given back their lives by this man listening to their symptoms alongside test results and treating them when the NHS had turend their backs on them. Unfortunately I was not one of them, but I am hopeful that his advice will still help me in the future.

Justy.

Hi Justy

I am one of those patients who got their lives back way back in 2002 because I found a knowledgeable private Endo who after getting these so called waste of time tests done for me showed I had a severe adrenal and thyroid problem and started on hydrocortisone and dessicated thyroid.

It soon felt like I had my life back, not a cure but I continue being able to do so much more than the majority of people with ME/CFS. Only today I brought a friend round to my house who has Fibromyalgia plus ME/CFS and no treatment. She seriously cannot go on like this but I recognise that she has severe adrenal issues and probably thyroid involvement too so I am going to get a saliva test done for her and once we get the results she will probably self treat. That is how desperate we can be here in the UK because the NHS has let her down. She feels she has no quality of life whatsover, she has lost everything and doesn't want to continue living like this.

I would like Dr Shepherd to see just what I can do in a day. Very shortly tonight I will be doing my jigsaw but as I put on dance music to help my concentration I know I will just have to get up and dance, I cannot stop myself and everytime I do this I feel such delight and joy.

This is on top of me already doing 5371 steps today (according to my FITBIT monitor) which included a good walk with my dog, shopping and having the visit from my friend.

Treating the thyroid and adrenals if indicated can literally give you back a life worth living.

Pam

 

Hi Justy

I am one of those patients who got their lives back way back in 2002 because I found a knowledgeable private Endo who after getting these so called waste of time tests done for me showed I had a severe adrenal and thyroid problem and started on hydrocortisone and dessicated thyroid.

It soon felt like I had my life back, not a cure but I continue being able to do so much more than the majority of people with ME/CFS. Only today I brought a friend round to my house who has Fibromyalgia plus ME/CFS and no treatment. She seriously cannot go on like this but I recognise that she has severe adrenal issues and probably thyroid involvement too so I am going to get a saliva test done for her and once we get the results she will probably self treat. That is how desperate we can be here in the UK because the NHS has let her down. She feels she has no quality of life whatsover, she has lost everything and doesn't want to continue living like this.

I would like Dr Shepherd to see just what I can do in a day. Very shortly tonight I will be doing my jigsaw but as I put on dance music to help my concentration I know I will just have to get up and dance, I cannot stop myself and everytime I do this I feel such delight and joy.

This is on top of me already doing 5371 steps today (according to my FITBIT monitor) which included a good walk with my dog, shopping and having the visit from my friend.

Treating the thyroid and adrenals if indicated can literally give you back a life worth living.

Pam

But Dr Shepherd does recommend adrenal and thyroid tests - repeated ones in fact. A frequent problem is that UK doctors are not doing them, hence the MEA's offer to send them the booklets. The booklets may not be perfect, but I think they have the potential to improve GPs' woefully-limited understanding and treatment. I have requested one to be sent to my GP.

 

Here is just one example (=Sjogren's syndrome) from the Differential Diagnosis section of our MEA booklet for doctors of how I go into considerable detail about the need for proper and detailed investigation for a long list of conditions that are misdiagnosed as ME/CFS.

Sjögren’s syndrome (SS): A number of viruses, including Epstein-Barr virus and endogenous retroviruses have been implicated in the causation of SS, as well as an uprated cytokine profile. The commonest presenting features are dry eyes (causing a gritty sensation) and a dry mouth. Vaginal dryness (causing painful intercourse) and respiratory tract dryness (causing a dry cough) may also be present. Debilitating fatigue and/or arthralgia is present in a significant proportion. Anti-Ro and/or anti-La antibodies are found in approximately 75% of SS patients. Hypergamma- globulinaemia with raised immunoglobulin G (IgG) and/or IgM is common. A Schirmer test assesses occular dryness.

 

Here is just one example (=Sjogren's syndrome) from the Differential Diagnosis section of our MEA booklet for doctors of how I go into considerable detail about the need for proper and detailed investigation for a long list of conditions that are misdiagnosed as ME/CFS.

Sjögren’s syndrome (SS): A number of viruses, including Epstein-Barr virus and endogenous retroviruses have been implicated in the causation of SS, as well as an uprated cytokine profile. The commonest presenting features are dry eyes (causing a gritty sensation) and a dry mouth. Vaginal dryness (causing painful intercourse) and respiratory tract dryness (causing a dry cough) may also be present. Debilitating fatigue and/or arthralgia is present in a significant proportion. Anti-Ro and/or anti-La antibodies are found in approximately 75% of SS patients. Hypergamma- globulinaemia with raised immunoglobulin G (IgG) and/or IgM is common. A Schirmer test assesses occular dryness.

Which other clinical guideline on ME/CFS goes into this sort of detail?

 

I'd go as far as to say that "immune-modulators" are very unlikely to get at the heart of the condition purely because we don't yet know what in particular needs targeting, with something as complex as the immune system a shotgun approach isn't going to get you very far and could indeed make things worse.

Well an immunemodulator saved my live and very slowly but steadily improves my health. It was a calculated gamble and I still do not regret it.

As for autoimmunity, the pathogen I suspect does not induce an adaptive response. So how can it be autoimmunity????

I do not know what you have but if you have what I have you are just at the beginning of your journey.

 

I disagree that immune testing implies ongoing unidentified pathogens.

I doubt you know more about it than my immunologist who says my immune dysfunction pattern is clearly indicative of an ongoing infection, even when we've (temporarily) cleared all the known, testable infections. She says it looks like I have an ongoing infection with something we can't yet detect. In my mind, her training and experience in patterns of immune dysfunction and what they might mean trump your belief.

Naturally, I have no interest in changing your belief. You're entitled to believe what you want. I'm a researcher by inclination and training and prefer scientific data to belief, so I'm going with established data for myself.

I fear I'm fighting against a lot of years of belief of ME/CFS as being of infectious origin but I believe the immune activation in the absence of any consistent pathogen findings over a 20+ year period means we should perhaps be looking more towards a disease of autoimmune pathology rather than of infectious.

I think we are experiencing several layers of confusion here. The first is in interpreting the results of pathogen testing in ME/CFS. Research has not (yet) found a single pathogen in all ME/CFS patients. It is NOT true that NO pathogens have been found in ME/CFS patients. In fact, there are quite a few known pathogens found frequently in ME/CFS patients. It's just not the same single pathogen in everyone. So it's not that NO pathogens are found, it's that a unique universal pathogen has not been found. Big difference.

A second layer of confusion lies, I think, in confusing cause and effect. Most of us would agree that no single pathogen has been found to be the cause of ME/CFS. Nevertheless, having ME/CFS (whatever the cause) and the resulting immune dysfunction results in multiple pathogens in PWME.

Those pathogens need to be identified and treated. Just because they are not the primary cause of the illness doesn't mean they shouldn't be treated. In fact, they may be the cause of the majority of our symptoms.

Which is where a third layer of confusion comes in. The primary cause of the illness does not need to be the infection or condition that causes the majority of, or the most serious, symptoms. Treating symptoms and secondary conditions can make a vast improvement in the patient's condition even when the primary cause cannot be addressed.

We have HIV/AIDS as a model here. Patients were first identified because they were suffering from reactivations of common infections in the herpesvirus family, among other known infections. Sound familiar? It was determined that none of those infections was the cause of AIDS in part because all patients did not have the same infections. Sound familiar? Nevertheless, those infections were causing the vast majority of the symptoms in AIDS. Patients were not dying from the immediate effect of the HIV virus, they were dying from the secondary infections that their bodies could not control because HIV was destroying their immune systems' ability to fight those infections.

What did they do in the early days of AIDS treatment before HIV was identified? They treated the secondary infections which were causing most of the symptoms. This was long before they knew why these peoples' immune systems were misbehaving. It was long before they had any clue what the unknown infection was. While they couldn't stop the damage to the immune system, not knowing the cause, they could vastly improve quality of life and reduce damage to the body done by the secondary infections.

We don't have to know the primary cause of the illness to know that patients have many secondary infections and that those infections need to be treated to prevent further damage to the body and to reduce symptoms. But if we refuse to test for and treat those secondary infections simply because they are not the primary cause of the illness, we are fools. Infections are infections. The damage is done whether or not the infection is primary or secondary.

There is no concrete evidence that ME/CFS is not infectious in origin. It appears not to be caused by a single currently known pathogen, but there's even some question about that. We don't know everything about the interaction of infections with genetic and environmental factors. In fact, there's much we don't know about the infections we are already aware of. And of course, there's still the possibility of infections that have not yet been identified.

ME/CFS could be the result of hit-and-run damage by multiple pathogens. That might be the root of an autoimmune situation. It could be the result of an ongoing infection that we are currently unable to detect, as in the HIV situation not that long ago. It could be caused by something else entirely. We simply don't know at this time.

Immune testing is I believe helpful in showing that there is something not working as it should but it's a silly jump in my opinion to automatically assuming that something is a pathogen that has evaded detection for so long.

I'm certainly not jumping to the conclusion that the primary cause of ME/CFS is an infection. I'm just not jumping to the silly conclusion that it's definitely not. Nor am I jumping to the silly conclusion that medical science has already detected every pathogen that exists. Now that IS silly.

The cause is unknown. It could be any number of things. There are quite a few possibilities currently being researched. What's silly at this point is jumping to conclusions about what is or is not the cause at this point in the research.

I believe unfortunately that people "want" there to be a virus at the heart of the conditions purely because it is a simple explanation but that's not to say it's the right one.

I doubt anyone "wants" a virus to be at the heart of the condition simply because that's a simple explanation. First of all, it is far from a simple explanation. If it IS an infection (which is far from certain) it's probably a difficult and complex infection probably in a difficult to find location like the nervous system or the gut. (Ian Lipkin is no fool)

What most of us "want" is not a simple explanation, but broad and open-minded research which includes investigation into the possibility of a pathogen at the root. What we do NOT want is the dismissal of a likely avenue of research because of ridiculous assumptions and poor interpretation of current knowledge.

I also think our current understanding of the inner workings and interconnections of the immune system make it very difficult to treat immune dysfunction - I'd go as far as to say that "immune-modulators" are very unlikely to get at the heart of the condition purely because we don't yet know what in particular needs targeting, with something as complex as the immune system a shotgun approach isn't going to get you very far and could indeed make things worse.

And there you've given a good explanation for why extensive immune testing is valuable for PWME. A shotgun approach to treating immune dysfunction is certainly problematic. Much better to have some knowledge -- through individual testing -- of what's malfunctioning in your own individual immune system and treating accordingly when possible.

For example, my daughter and I do not have identical immune dysfunctions, therefore we don't use the same immune treatments. How would we know what to do if we didn't have the test data to work from? Without testing, the choices are to do nothing or risk doing the wrong thing. Why should we not test when tests are available to guide treatment?

Treating these co-infections may help symptoms a little but it's not going to solve the bigger issues at the heart of the condition - just as treating co-infections in HIV/AIDS does not cure the condition overall.

Quite a few people who have treated these co-infections will argue that they help symptoms only "a little". In my family alone, my uncle went from mild/moderate to full remission with antiviral treatment. My daughter was so sick she would have had to drop out of college during her first year when she got antiviral treatment. Now she's in remission and in graduate school in engineering. I went from bedbound and unable to read to up all day and tutoring 15-20 hours a week. While I'm not in remission, I don't consider going from bedbound with no life worth speaking of to being a functioning adult earning some income a "little" improvement. I can't do everything I want, but I don't feel like I constantly have the flu. I can read. I can put together lucid sentences. I'm not in constant pain. I don't call that a "little" improvement in symptoms. I call it getting some of my life back.

We are not the only people who have had more than "a little" improvement from treating co-infections. Dr Petersen would not be treating patients with antibiotics and antivirals if he was only seeing "a little" improvement from them. Nor would Dr Klimas, or Dr Montoya, or Dr Kogelnik, or Dr DeMeirleir. They are using them because they see significant improvements.

No one is suggesting, especially those doctors, that pathogen treatments cure ME/CFS. We don't have a cure yet. But to avoid (or worse, deny patients access to) treatments that can provide significant improvement simply because they are not a cure for the primary cause is beyond stupid.

Testing for pathogens and immune dysfunction is NOT unnecessary. It is critical for guiding appropriate treatment to give significant quality of life improvements in PWME.

 

Which other clinical guideline on ME/CFS goes into this sort of detail?

How about the ME/CFS Primer for Clinical Practioners?

Not that I'm suggesting there's any excellent clinical guideline. That's something we're sorely lacking.

 

Both cover fairly similar ground but the MEA purple booklet (52 pages with around 300 referenced papers) goes into far more detail on differential diagnosis/misdiagnosis and investigations.

 

Both cover fairly similar ground but the MEA purple booklet (52 pages with around 300 referenced papers) goes into far more detail on differential diagnosis/misdiagnosis and investigations.

Yes, both are useful documents with different focuses. Differential diagnosis is critical, as is treatment.

Hopefully someday we'll have a single document that does a superb job of both. That's a very big challenge, though, and maybe not possible.