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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Known cases of CFS misdiagnosis.


Senior Member
hi dannybex, the problem with B12 and vitamin D is that for alot of people their is no chance of them getting their levels repleted, because new scientific evidence has proved that the referance ranges used by labs around the world are wrong, and for some completly inexplicable reason the labs haven't changed the referance ranges.

As an example vitamin D deficiency was believed to start under 50nmol/L but new research shows it starts at under 125nmol/L a massive differeance, so people are getting tested and the diagnosis is being missed, and even when they are deficient under the old levels their not getting enough supplimentation to solve the problem. Also their are hardly any doctors in the world who are aware that you need magnesium, zinc, boron and small amounts of vitamin A to be able to absorb vitamin D and if people are deficient in these nutrients giving them vitamin D is a waste of time.

The referance ranges have been scientificly proved to be wrong for B12, TSH for thyroid and glucose levels when cheeking for diabeties and pre diabeties, which is leading to millions of people world wide being misdiagnosed, not just with CFS but a wide varity of other conditions. All these conditions are known to cause the symptoms of CFS by themselves and yet they are being missed by the medical profesion at an alarming rate. here's a link about the old way of diagnosing vit d deficiency http://www.ncbi.nlm.nih.gov/pubmed/19835345 heres a link to new research on vit d http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml heres a link about TSH ranges http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm B12 should be above 300pg/ml most labs say it should be above 160.

Go CBS good on you for sacking so many doctors, i've got through a similar amount.

I found out i'd been misdiagnosed for 17 years! unfortunatly due to the total incompetance of alot of doctor's i still haven't got the right diagnosis, but i got a new doctor last week who's great, and juding by the number of failed test results that arrived in my letter box this morning, i should hopefully know the answer soon. all the best every one


Senior Member
Ashland, Oregon
My eldest sister had CFS for years before I got sick. When I came down with it, she kept telling me it was CFS, but I was in the medical profession and had long since concluded that she was neurotic since all she ever did was complain about how bad she felt, and how no one understood how sick she really was blah, blah, blah. I totally ignored her illness for all those years and I was really annoyed that now she kept insisting that my very real, very serious and very frightening symptoms were the same as her imaginary illness.

Then at one point after having every test in the book all come up negative, my boyfriend at the time (an ophthalmologist I had been dating for years) very cautiously and gingerly said to me, "Ya know, there is one thing that could be doing this to you, and it's really the only thing that fits now." "What's that?", I asked, wondering why in God's name he hadn't mentioned it before. He hesitated for a moment and then took the plunge, "Chronic Fatigue Syndrome"

And just as he figured I would, I flipped! I almost slapped the poor guy and replied while practically foaming at the mouth, "You SOB! Can't you see I'm sick here? What's the matter with you? How DARE you say such a thing you insensitive #%&*@!...." and that was just the warm up. Turns out he was right. Yup, had a little egg on my face on that one. Glad he was the forgiving type. :ashamed:

Hi Stone,

Thanks much for taking the time to write your story. It reminds me of another story I heard once from a woman who I believe was a manager at a high-achieving type of company, where employees were expected to work obligatory 60-70+ hr. weeks. One of the employees developed CFS and/or FM, and asked that his schedule be modified to accommodate his limitations. They had a big meeting with human resources and several other top managers.

After the employee was dismissed from the room, they unanimously decided this guy was surely a slacker, and they certainly weren't going to let him bamboozle them. So with great pride in their perceptive abilities, they denied his requests, and he was unable to keep working full-time.

Well, this manger a number of years later developed FM so severe she herself was no longer able to work. She simply had no comprehension that somebody could become so sick and incapacitated from something so benign sounding as CFS or FM.

This story, and yours as well, makes me wonder at times how many of us would really be so understanding of other PWCs if we were healthy, and especially if their limitations were directly affecting us. For me, it's a humbling thing to consider; makes me want to try to be a little more tolerant of those who aren't able to understand the difficulties we face.

Stone, I sent your story to a friend of mine with CFS. Even though she was a nurse (many years ago), she really had no idea what some of the prevailing attitudes are toward PWCs at this time. I think CFS was much less on the radar screen when she first became ill, so she somehow was able to avoid some of the disbelief so many PWCs experience.

Best, Wayne


Senior Member
correlations and diagnostic confusion

Suppose many of these diagnoses are not misdiagnoses at all, only complications of ME/CFS. For example, the rate of chronic lymphocytic leukemia in ME/CFS patients is way above the average. Early symptoms of CLL prominently feature fatigue. This is also true of a range of cancers. There appears, for example, to be a correlation between ME/CFS, frequent ovarian cysts and ovarian cancer. (Of course, if you start with the assumption ME/CFS is benign, such a correlation can never occur.)

After trying to second guess a differential diagnosis of a female friend, I decided the only way to tell was to remove an ovary and get a pathologist's report. This turned out to be exactly what experienced doctors have decided to do. From preliminary evidence, I'm guessing they will find cancer, but still confined to the ovary. There appears to be a continuum of pathological processes here.

Assume, for the moment, finding a lethal illness automatically changes the diagnostic label, because "everyone knows" ME/CFS is a benign condition. In this case, wouldn't you get precisely the combination of correlations and diagnostic confusion with serious illnesses we see at present?


senior member
Concord, NH
"This story, and yours as well, makes me wonder at times how many of us would really be so understanding of other PWCs if we were healthy, and especially if their limitations were directly affecting us. For me, it's a humbling thing to consider; makes me want to try to be a little more tolerant of those who aren't able to understand the difficulties we face."

I agree Wayne, I mean until we came down with this damn disease, didn't most of us just take for granted that we would bounce back from whatever it is that struck us down? I mean I once had the flu for a week, totally knocked me out, but gives you some perspective on life, like what how much better you feel when not ill etc...



Senior Member
hi all, here's one womens tragic storey of being misdianosed with CFS for 30 years http://www.patientopinion.org.uk/opinions/8719

I would like to say I am suprised and shocked - but I am not.

Frankly speaking, I think most people who suffer from prolonged, serious fatigue, have an undiagnosed illness or some biochemical/hormonal deficiencies/imbalances.

Probably several conditions at the same time, due to some inherited failure/mutation in DNA.

I think 'CFS' is just an excuse diagnosis for incompetent doctors.

I neither believe an unknown virus to be the cause for this fatigue - and the recent hype regarding XMRV, in my opinion, may even be contra-productive, as it will retain some patients to investigate further into why they are ill.


Senior Member
Hi curry Totally agree with you, i think the real reason all the studies into retroviruses, and for that matter all the studies ever done into CFS, come up with totally different results, is that their all being done on people with a large collection of illnesses that have been misdiagnosed as CFS, with only a remote chance of someone affected by a new kind of virus even being in them. The worse tragedy is going to happen if they decide to do clinical trials with highly toxic anti retro viral drugs on these people. because it's highly likely that someone with the likes of addisons or hemochromatosis will die if given theses drugs, and that will then immediatly put all investigations into it back by at least a decade!

The symptoms discribed in the diagnostic criteria for CFS are nothing more then a good discription of the sypmtoms of about a hundred known chronic illnesses, the list of diseases to be ruled out are hoplessly incomplete and the testing thats recomended to be done is woeful, add to that most doctor's think it just means your nuts, don't test for things or ignore failed tests results, plus labs continuing to use out of date referance ranges and you end up with a situation where it's quite possible that CFS is as you say just an excuse diagnosis for incompetent doctors.

i've suffered needlessly for 17 years because of being misdiagnosed and then another two and a half years because even though it was proved i didn't have it, the doctors either stuffed up the testing or couldn't be bothered to work out what was going on. i now have a new doctor who running all the right tests which i'm failing and hopefully i will have the correct diagnosis by christmas!! all the best


Senior Member
I think you hit the nail right on the head with your post.

i now have a new doctor who running all the right tests which i'm failing and hopefully i will have the correct diagnosis by christmas!

That's great news!! :Retro smile:



senior member
Concord, NH
Healthcare is too important to be run by MDs and insurance companies.

So who does this leave to run Healthcare? Gov't? and you want to entrust them with your life? Good luck, no thanks, doesn't sound like the UK has a leg up on the US.


Senior Member
Thanks curry! hopefully i'll have escaped this madness soon!

Hi ggingues the thing with goverments is, that if they could some how be made aware of the billions of dollars their paying out to misdiagnosed people in sickness benifits, they'd do something about it, for purely financial reasons if nothing else. I can't see many doctors putting their hands up and admiting they've been stuffing up on a huge scale for decades. All the best


Senior Member
Northern California
My aunt was diagnosed with cfs for years, when in fact she had a heart valve problem. Once they replaced the heart valve, she was fine. After years of being tired, having sleep problems, and trying stuff that I kept giving her!



Senior Member
Hi all, here's one person's misdiagnosis story and their Email conversations with a certain Professor Simon Wessly, who i'm sure most of you are aware of http://www.meactionuk.org.uk/Enough_is_Enough_-_010109.htm

This is a great article, and should be read by anyone who has been diagnosed with CFS.

Below an extract of the above linked article:

If your GP surgery, hospital, health authority or health board is short of cash or running a large budget deficit then if you arrive for a diagnostic assessment and your doctor is CFS/ME friendly and hasnt got the money to chase any possible rare expensive-to-identify condition that may or may not pop into his or her head at random; it is far cheaper and quicker to take the shorter route and diagnose and possibly misdiagnose CFS/ME.

Over the last couple of days, I have been in an exchange of e-mail with Professor Simon Wessely.

Professor Wessely has asked me not to repost his e-mail so I have agreed not to.

I wrote to him to ask him about the status of CFS/ME and blood donation and I got a swift reply within 30 minutes or so of sending my e-mail to him.

Professor Wessely said that regarding blood donation, he had not known about the situation regarding CFS/ME and the issue of refusing donations from patients.

He did say that this situation was probably one of those precautionary measures due to a long since dismissed link to a possible retro-viral infection.

In reply I took the opportunity of raising the subject of misdiagnosis and CFS/ME.

I pointed out that the artificial construction of CFS/ME has allowed doctors from GPs to consultants to give a diagnosis of CFS/ME prematurely when the doctors concerned run out of diagnostic options due to their lack of knowledge.

In the process of doing this, patients end up misdiagnosed because they dont get referred upwards to more senior specialists, they dont get specialist blood tests or other specialist tests focussed on diagnosing rare diseases that the vast majority of doctors do not see.

Patients dont get access to procedures like CT and MRI scans and in fact if an NHS department has a problem with departmental budgets or overspending then it is far easier to hand down a diagnosis of CFS/ME than it is to spend money chasing a possible diagnosis of a rare disease. Read More...


Senior Member
My diagnosis of ME/CFS/FM is based on a long list of symptoms which I thought all started back in 1990. After taking a closer look at each of my symptoms it turns out that I have / had celiac, ataxia, myoclonus, candida, dysbiosis, chronic hypoglycemia, vulvodynia, OI, PEM, LBB, etc etc etc ... And it looks like I had some of these symptoms since I was a child. Which leads me to think that my body was always just one step away from developing ME/CFS/FM. I feel better now but if I push myself or change my diet, these symptoms come back.

It seems to me that in order to be diagnosed with CFS you just have to have 6 months of fatigue and some neuro problems. So until they start looking for WHY patients have these symptoms, we're just going to be grouped in together. It makes it easier for the docs and insurance companies ... but is a disservice to us. tc ... x


Donate Advocate Demonstrate
Hi all, here's one person's misdiagnosis story and their Email conversations with a certain Professor Simon Wessly, who i'm sure most of you are aware of http://www.meactionuk.org.uk/Enough_is_Enough_-_010109.htm

Thanks rlc, a really worthwhile and excellent article. I have often thought that it could be easy to misdiagnose M.E and as pointed out, once you have the labl, its incredibly hard then to get any or new symptoms taken seriously.

I have noticed a new trend n recent times in the U.K, with the advent of CFS label for more and more peole who actually have other diseases to be popping up on forums etc with a diagnoses of CFS. I know of course its possible to have M.E and thyroid disorder and coeliac for example, but i cant help wondering if what they really have is the other disease, but poorly controlled.

On the other hand i have classic M.E symptoms and all my standard tests are frustratingly normal.
A very thought provoking thread.


Senior Member
Hi justy, i've noticed the same trend of duel diagnosis as well, even seen people saying things like their thyroid tests are all over the place and their doctors arn't doing anything about it!

The main reason i joined this forum was because reading through the posts i saw so many people asking about failed test results and there strange symptoms. Alot of people are asking how their failed tests results relate to CFS and the only answer is they don't! they've either been misgiagnosed, got CFS and something else or it's being caused by side effects of meds and suppliments their on. People with CFS arn't supposed to fail standard tests, it's the whole point of CFS, no known cause.

I've seen people asking about symptoms that are so far out of the guide lines of the diagnostic critera for CFS it's unbelivable, like red palms, skin turning yellow, salt cravings etc,etc these kind of symptoms are signs of well know diseases that can cause the symptoms of CFS. Makes me wonder if these poor peoples doctors are even bothering to listen to them. I,ve been trying to post links to medical information to help these people get their doctors to work it out, but it seems like theres more every week!

I've got a list of tests that a homeopath of all people gave me, to rule out alot of the conditions that get mistaken for CFS, this list was the one that lead me to find out i'd been misdiagnosed, Got a bit to do today but I'll try and post it here today.

All the best!


Senior Member
Blood Tests for CFS/ME/CFIDS Misdiagnosis

Blood Tests for CFS/ME/CFIDS Misdiagnosis
This is the list of blood tests that I was given, that lead to me finding out that I’d been misdiagnosed with CFS/me for about 17 years. I’ve added a few extra tests which I’ve marked with a *, and some links to more information. These tests won’t rule out every possible cause of CFS/ME misdiagnosis, but should pick up the majority of them.

Complete Blood Count
Complete LFT Liver Function Tests
Complete KFT Kidney Function tests
Glucose (fasting) The old reference ranges for Glucose fasting have been proved to be wrong, the correct range for this test should be under 100mg/dl (5.5mmol/l) using the old ranges Diabetes and Pre-Diabetes (also known as impaired glucose fasting or impaired glucose tolerance) can be missed. The symptoms of these conditions can easily be mistaken for CFS/ME; the reference ranges for the two hour Glucose test have also been proved to be wrong, information on correct reference ranges here http://www.networkreferencelab.org/nrl_content.aspx?id=3233
Symptoms of Pre-Diabetes here http://www.diabitieslife.com/diabetes/diabetes-care/type-1/causes-and-symptoms-of-pre-diabetes.htm

Complete Iron Studies (don’t let Doctors just do Ferritin) a lot of Doctors are out of date on how to read high iron levels in regard to Hemochromatosis and still rely on genetic testing which they shouldn’t do. Information on how it should be done can be found here http://www.ironoverload.org/
Here’s an article about how hemochromatosis can cause the same symptoms as CFS/ME

TSH should be below 2.5. The old reference ranges have been proven to be wrong see http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm
Free T3
Free T4
Reverse T3
Thyroid antibodies-antithyroglobulin and antiperoxidase
TRAB (thyroid receptor antibodies)
Morning Cortisol; before 8.30am. A lot of Doctors are unaware that you can have a normal result on this test, but still have a major Adrenal problem, article about it here http://www.suite101.com/content/adrenalinsufficiency-a1543
If there is any doubt about Adrenal problems the only test that can be relied on is the ACTH stimulation test, information about it here http://www.acthstimulationtest.com/
Article about Addison’s disease here http://www.suite101.com/content/addisonsdisease-a1714
A site with a good graph that illustrates what failed adrenal tests may indicate is here http://en.wikipedia.org/wiki/Adrenal_insufficiency
Anyone with salt cravings should have their adrenal glands investigated, Aldosterone controls salt levels in the body and is made in the adrenal glands.

For the next two tests women please note date and time of the test in the menstrual cycle if relevant
For any hidden inflammation, infection, allergies do Ig tests
e.g. Ig A. Ig E, IgG etc

Gluten Sensitivity tests, You have to eat gluten containing food before this test or else you may get a false negative result and miss the diagnosis of Celiac Disease. If any doubt remains try a gluten free diet for a few months.

Folic Acid

B12, B12 should be at least above 300pg/mL (221pmol/L) a lot of labs use reference ranges a lot lower which can lead to misdiagnosis, don’t let a doctor tell you that because your blood looks fine you don’t have it. Changes in the blood caused by B12 deficiency (Macrocytosis) is a late sign of deficiency and you can get the symptoms of it without this happening.

Information about this can be found here http://webcache.googleusercontent.c...+b12+referance+range&cd=2&hl=en&ct=clnk&gl=nz

B12 levels need to be monitored while being treated, some people can have mal-absorption syndromes that stop it from being absorbed, in which case levels can continue to fall leading to pernicious anaemia which can be fatal. Information on B12 deficiency here
http://www.mayoclinic.com/health/vitamin-B12/NS_patient-vitaminb12/DSECTION=evidence And here http://www.essortment.com/all/vitaminbdefi_rndj.htm
Some people can get side effects from B12 supplements, information about it here http://ezinearticles.com/?The-Side-Effects-Of-Vitamin-B12&id=816035

*Vitamin D , Vitamin D deficiency causes severe fatigue because you need it to absorb Phosphorus and you need Phosphorus for your ATP to work. ATP is like a little battery that’s found in every cell in the body. Full explanation of ATP here http://www.ihealthdirectory.com/adenosine-triphosphate/
It also causes joint pain, muscle pain and muscle twitching amongst a host of other symptoms. The old reference ranges for Vitamin D have been proven to be wrong. Old recommended reference ranges and recommendations for treatment can be found here http://www.ncbi.nlm.nih.gov/pubmed/19835345 Information on new reference ranges and lots of other information here http://www.vitamindcouncil.org/health/deficiency/am-i-vitamin-d-deficient.shtml

Anyone taking high doses of Vitamin D should have their Calcium levels monitored because there is a chance of developing Hypercalicimia when taking Vitamin D. If Vitamin D levels don’t rise with treatment, it indicates that there is another problem in the body, stopping it from being absorbed e.g. Mal absorption syndromes, kidney conditions. Liver conditions, Hypoparathyroidism etc and needs to be investigated.

This site contains general information on side effects and drug interactions of Vitamin D and has more detailed information if you follow the links at the bottom of the page http://www.drugs.com/mtm/vitamin-d3.html

*Sleep Apnea, Information about Sleep Apnea can be found here http://www.medicinenet.com/sleep_apnea/article.htm

*Lyme disease, Testing for Lyme disease is usually done with the ELISA and immunoblot tests; however these tests are notoriously inaccurate and can often produce false positives results, which can lead to people being treated for something they haven’t got, or not getting treatment because it’s assumed it’s a false positive. Information on these tests here http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm

However a new test called the VOVO LIPS test has been designed which should be able to resolve this situation. Brief information about it here http://www.sciencedaily.com/releases/2010/06/100618141631.htm Scientific information here http://www.asm.org/asm/images/Communications/lyme disease-cvi.pdf

Anyone who orders tests for Lyme or any other Bacterial or Viral infection needs to make sure that they get a plain English explanation of what the tests mean from an expert, these tests are incredibly difficult to interpret. A lot of healthy people have positive IgG or IgM results and high titers on these kinds of tests, and it just means that they had the illness in the past and are often immune to it. I’ve even had these kinds of tests misread by a doctor.

*I’ve read about some doctors saying that, about five percent of cases of CFS are misdiagnosed SLE (Systemic Lupus Erythematosus) and another five percent are misdiagnosed Multiple Sclerosis, diagnosis of these two conditions is far too complicated for me to write down, so here’s links to how it’s done SLE (Systemic Lupus Erythematosus) here http://www.lupuscanada.org/english/living/1000faces_sle1.html
Multiple Sclerosis symptoms here http://www.mult-sclerosis.org/mssymptoms.html
Diagnosis here http://www.mult-sclerosis.org/diagnosingms.html

*Porphyria, Tests are blood, urine and stool tests for porphyrins, Information on the different kinds of Porphyria here http://digestive.niddk.nih.gov/ddiseases/pubs/porphyria/

*Wilson’s Disease, Wilson’s disease could easily be mistaken for CFS/ME, and I have seen a lot of questions regarding Low cereuloplasin and high 24 copper urine tests on forums so here’s a link on how to diagnose it
*Another possible option is this chronic CO poisoning http://www.mcsrr.org/resources/articles/P11.html

A list which contains other conditions that can be misdiagnosed as CFS/ME can be found here http://www.wrongdiagnosis.com/c/chronic_fatigue_syndrome/misdiag.htm

Because the symptoms named in the various criteria for CFS/ME are so numerous and vague, and overlap with those of hundreds of other conditions, and because the number of tests mentioned to do in these criteria are so small, (for a comparison of the very different criteria for CFS/ME read this http://www.nzgg.org.nz/guidelines/0084/040518_matrix.pdf )and because of the long held belief that CFS/ME is somehow a mental problem a lot of suffers haven’t even had these tests done, plus the references ranges used for Glucose, TSH, B12 and Vitamin D being wrong, (all of which are tests that point to conditions that have the same symptoms as CFS/ME and effect hundreds of million people worldwide.)

Everybody with a CFS/ME diagnosis should seriously consider that they may have been misdiagnosed.

I would recommend that every CFS/ME sufferer gets copies of every test that’s been done on them if they haven’t already. So they can see if something’s been overlooked and so they can compare them against the new reference ranges.
If you have unhelpful doctors, find out what your patient rights are and if needs be seek legal advice to overcome the problem. If possible change doctors and keep doing it until you find one that is prepared to investigate your condition thoroughly.

A useful tool for narrowing down what conditions failed lab results and symptom may point to, can be found at http://www.diagnosispro.com/
It’s designed to be used by doctors so they can do a differential diagnosis, which means coming up with list of conditions that fit with the patient’s lab results and symptoms. Full definition of differential diagnosis is here http://en.wikipedia.org/wiki/Differential_diagnosis
This site can be a bit complicated to use, but instructions on how to use it can be found here http://en.diagnosispro.com/diagnosispro_help/generate_a_differential_diagnosis_list/
The site often uses a lot of medical terns which can get confusing so here’s a dictionary of medical terms http://www.medterms.com/script/main/hp.asp this site also contains vast amounts of other useful information.

A lot of people with a CFS/ME diagnosis understandably try a lot of different medications and supplements in an effort to relieve their suffering. However after reading through posts on many different forums it is apparent that a lot of people are not getting advice from their doctors on the side effects and drug interactions of their medications, which may be worsening their condition.
If you are not receiving correct medical information on the side effects, drug interactions etc of the medicines and supplements your taking, on this site you will find information about every prescribed medication and vitamin and most supplements and their side effects etc http://www.drugs.com/
Information on side effects of most Herbs and supplements can be found here http://www.nlm.nih.gov/medlineplus/druginfo/herb_All.html

If anyone feels that the information in this post would be helpful to other CFS/ME sufferers on other forums, support groups etc, will they please pass it on. Thanks


Senior Member
southern california
Some of the best CFS doctors have reported that ~20% of those initially diagnosed with CFS/ME actually have a primary sleep disorder.

Does anyone know if other diagnosis that look like CFS have tender lymph nodes? I don't think tender lymph nodes are found in heart disease, endocrine, or sleep disorders. I think the tender lymph nodes(also enlarged lymph nodes or sore throat) is a good indicator that you may have CFS/ME, an infection, or other immune disease.