I'm interested to hear peoples views on CFS, and whether you think it exists - or whether you think it's a name given to a collection of issues not 'picked up' by our doctors (such as adrenal fatigue, hormone imbalances, thyroid problems, insulin resistance/pre diabetes and so on)
I have actually been referred to the CFS clinic in Exeter, after being 'diagnosed' with CFS last June. I have since started taking NDT and felt better for a while, but even though I am optimally dosed the tiredness has crept back in again. My adrenal saliva tests show low cortisol, but I have been working on this for almost a year, and whenever I stop taking adrenal cortex extract, the tiredness comes back again.
Sometimes I wonder if it would be 'easier' to accept the CFS diagnosis as I never seem to 'stay well', no matter what I do.
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I have a mixed opinion but my experience of people with m.e, cfs and fibromyalgia is that there is generally some psychological reasons to the symptoms. Most, if not all of the people who I have known with these diagnoses have experienced trauma and difficulty in managing subsequent difficult emotions, this then leads to a somatic response.
On the other hand, if someone experiences a traumatic event their cortisol will naturally rise to help them cope with the event. If the traumatic event goes on for a long time the body makes adjustments and adapts to the higher cortisol level, and maintains it indefinitely. The higher cortisol level may continue for years - and all the time it continues there is a reduction in conversion of T4 to T3, insomnia, depression, anxiety and many other symptoms - all related to excess cortisol. So the person develops symptoms of hypothyroidism in addition to the problems caused by the high cortisol. Eventually the excess output of cortisol could become unsustainable and levels begin to drop. But this is not a healthy drop at this point. It is the drop caused by exhaustion. Then health really falls off a cliff.
No psychological explanation is required. It's all physical.
I can't even begin to tell you how wrong you are! M.E. has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder and is classified in the current WHO International Classification of Diseases with the neurological code G.93.3. The classification was brought about through the work of Dr Melvin Ramsay and Dr John Richardson, who demonstrated that, by use of SPECT scans, M.E. patients have hypoperfusion in the brain, particularly the brain stem, anatomical changes in the brain similar to MS which show up on MRI scans, and widespread inflammation in the central nervous system. It is why the disease is called Myalgic Encephalomyelitis. My = muscle, Algic = pain, Encephalo = brain, Mye = spinal, Itis = inflammation.
When you believe M.E. to be of a psychological origin, it is because you have fallen for the myths perpetuated by the psychiatrist, Simon Wessely and his 'Wessely School.' who have use a slick media campaign to promote the idea that 'CFS' is the same as M.E., and that 'CFS' is entirely psychological in nature and can be cured with the bogus therapies GET and CBT, and they have done this solely for financial gain for themselves and other vested interest groups, particularly the insurance companies.
If you have known people given a diagnosis of 'CFS' - which is ALWAYS a misdiagnosis - and they have appeared to you to have an entirely psychiatric problem, then they very simply do not have M.E. (nor 'CFS').
Please, please read my comment further down the page, and better yet visit hfme.org to cure yourself of the falsehoods you have been led to believe in order that you no longer perpetuate this incorrect thinking across the Internet, and can correct others who continue to do the same, despite thousands of scientific papers detailing the biomedical findings in M.E.
When a genuine diagnosis of M.E. has been made through the use of SPECT, PET and MRI scans of the brain, the extent of injury in the severest of patients will involve both sides of the cortex, and the posterior chamber organs, (the pons and cerebellum), limbic system, the subcortical and brainstem structures are involved, and their degree of injury shows that anatomical integrity of the brain/CNS is no longer visible. The most severely affected M.E. patients are horrifically ill. Although the illness is in the same family of illnesses as polio and MS, MRIs most closely resemble those of an AIDS patient two weeks before their death, and when cancer patients are as ill as a genuine M.E. patient is then they don't have much longer to live. All this should speak volumes of the extremely poor quality of life of genuine M.E. patients and nobody is doing anything about it because of the term 'CFS' and its intentional and erroneous alignment with psychiatric illness. If you had met a genuine M.E. sufferer, you would know, but it sounds like the people you are referring to could be more accurately diagnosed with post-traumatic stress. There are plenty of people given a misdiagnosis of 'CFS' most definitely do not have M.E.
I really am convinced that my problem stems from anxiety.... I never checked my cortisol until the beginning of this year (which is low) so I wonder if it was high for several years due to stress, anxiety and depression - and now it's dropped to a lower level.
Another possible sequence of events is that some illness you had - could be thyroid-related or any other chronic illness - raised your cortisol and made you feel stressed, anxious and depressed as a result.
I have suffered with pretty bad anxiety since before I went to pre-school. I am utterly convinced that years of anxiety must be strongly related to my low cortisol levels now. It's interesting to note that I have been extremely stressed since Jan time as I have been suffering from rib/muscle pain, and my doctor - nor sports therapist, nor massage therapist could seem to get rid of it. I utterly convinced myself that I had breast cancer, so asked my doc for a mammogram. Everything came back normal, thankfully, but I got myself into such a tiz over it for months and months on end. I know my fatigue has got worse in that time.
Sometimes I think I am my own worst enemy! I do wonder if I have to seriously address my anxiety before I can even start to work on anything else, otherwise I am just going to go round in circles and drive myself mad in the process.
Maybe its time to consider a different treatment for your low cortisol? I took cortisone for two years and it made such a massive difference to everything. Before I was dragging myself through every day trying to have a normal life, but chronically exhausted. I had been on thyroid meds for around 20 years. And I honestly believe that my cortisone levels were so low because my adrenals had helped prop me up for all of this time..
I just looked up CFS on Wikipedia and the symptoms look suspiciously like the ones given for low thyroid function... en.m.wikipedia.org/wiki/Chr...
I don't believe it is a discrete illness because the etiology is unknown. Things like Lyme disease, which make you feel terrible, have a cause, but CFS appears to have none..... Or rather not a specific one. For this reason, it seems to me that it is a generic term for the doctors being unable or unwilling to work out the real problem. Its so much easier to put the blame on you for your ill health.
Don't give up on yourself, just be absolutely bloody minded and treat what you know is wrong.... You need tests and treat the deficiencies and if you still feel bad, then different testing...... You can get better but no half measures. I ran my credit card up paying for tests, but since I got well, I have cleared the bill. ( almost)
I know of a woman who lives near me who was diagnosed with CFS and just accepted it...... I have seen her out with her dogs over the years, I offered her information but she obviously thinks I am some kind of nutter..... ( Just one look at her and you can see she is hypothyroid) I saw her a couple of weeks ago dragging herself round town in a wheelchair, I asked if she had had an accident, but she said no, its the CFS.... I am too ill to walk anywhere any more.....
DonT go there, she is an old woman but only in her 50's.
I was diagnosed with CFS/ME and can't remember the last day I felt well.
I do feel it was based on 'can't find out anything else' attitude.
Since my diagnosis other relevant medical findings have been found yet consultants don't want to do anything other than say 'you have a diagnosis ', meanwhile my life continues to be hugely affected daily.
My gp is supportive but hands tied to a degree.
Then there are the Dr's & people that do not believe in this condition, & say its all in the mind. This is when I get annoyed that I am in a no win situation.
I went to the CFS/ME specialists for assessment. They agree I show the CFS/ME symptoms but also others over & above..... so they wouldn't take me on.
I've always though that CFS and ME are a collection of symptoms that doctors don't know or can't be bothered to treat the cause of. It could be low cortisol caused by trauma or autoimmune, pituitary problems caused by trauma, infection or autoimmune, thyroid problems caused by poor conversion, autoimmune, gut problems or whatever. But it's "sexier" (not for the patients!) to have special pain clinics etc for an incurable disease.
My personal view is 'Yes' it does exist but only because the impetus is put on the whereabouts of the TSH level. If your TSH is 'in range' they state it cannot be related to the thyroid gland but I had widespread pain, aches, so stiff I could barely walk. Fatigue is also high on the list of hypothyroidism.
So, if they took a list of clinical symptoms and ignored the TSH I wonder what it would point to as a diagnosis?
Also, I have read that the doses of thyroid hormones are much lower than used to be prescribed.
New research has found a link between low cortisol and mitochondrial dysfunction in CFS/ME. Having been told I have CFS and offered graded exercise and counselling and anti-depressants, all implying it's psychological, it's good to know the research supports my own theory that it's a physical disorder that they just haven't found the cause of yet.
I think there is always a physical cause and I speak as someone who was diagnosed with CFS in 2010 by an endo who had tested me for diabetes without good cause (serum glucose had always been unequivocally normal) and when that came back negative had no more ideas.
He chose to ignore rising TSH, falling FT4 and FT3 (both in the bottom 30% of the reference range), vitamin D of 10 (>50), vitmain B12 under 500, folate at the bottom of the range and ferritin 16(15-150).
He told me I had Chronic Fatigue Syndrome, said that there was help available but did not offer any sort of referral and discharged me. Another case resolved!
I think CFS/ME definitely exists as a recent trial in Norway showed that over 2/3rds of patients responded positively to Rituximab which is a drug used to treat autoimmune conditions. Most likely it will be found to be an autoimmune disease. Two more trials using this drug are planned (one in the UK and a larger trial in Norway).
The problem with CFS/ME as a diagnosis is that lots of people get this diagnosis when they in fact have other undiagnosed and untreated health problems eg. thyroid disease. Once better diagnostic markers are found for CFS/ME, I think this will become less of an issue.
I really think they dismiss a lot. I was diagnosed in 2009 with hyperthyroidism and was put on carbimazole for 2 years and reducing amount slowly . Now they say im fine,dismissed from endo bloods fine.But i didnt feel right i kept asking them to do bloods of which they were always obliging and tests always come back fine. I have now been diagnosed with fibromyalgia but somehow im not convinced and the fatigue is horrendous. They give me pain killers and im off to rhuematoid clinic in middle of january and i feel something not right at least when i was treated for thyroid i got some relief with medication. The fatigue alone saps most of my days and all tests show normal.
My opinion is that CFC along with fybromyalgia are umbrella terms used to cover an assortment of things and are usually a symptom of an illness or condition rather than a condition in their own right. My opinion differs from a medical one though.
I suffer from both, my fybro gets really bad when my meds are not right, disappears when they are, its one of the main signs for me that I need to adjust my meds.
The Department of Health has confirmed that ME/CFS has many possible causal factors, which include those of a neurological, endocrinal, immunological, genetic, psychiatric, and infectious nature.
I would challenge anyone who lived through such a debilitating illness not to encounter psychological trauma.
In June this year, Professor Baker of NICE confirmed at a Forward-ME meeting that NICE clinical guidleine 53 was "not fit for purpose" and there was "dangerous neglect" for patients diagnosed with ME/CFS.
He said the problem was because "It had been assumed there were specialists who knew what to do and there were not."
Most patients diagnosed with ME/CFS would confirm that they are not receiving adequate medical care, which is an abuse of our human rights.
Hopefully, now that Professor Baker has told the truth action will be taken to correct the wrongs that have been done to patients since the outbreak at the Royal Free Hospital in 1955.
There is nothing wrong in accepting a CFS diagnosis, but the only way to improve your health is keep an open mind and educate yourself. Along the way you might possibly find as I have done that you will educate healthcare professionals. Good luck.
Just a thought if Norway have found postive response to a drug that is give to autoimmune conditions dosent that make you think that people have undiagnosed auto immune illnesses
Yes and yes. Yes it's 'real', and yes, it's a name given to a collection of 'issues'. That's what 'syndrome' means. A bunch of symptoms. What doctors haven't yet cottoned onto is that treating symptoms without finding the root cause is what is causing the demise of the NHS. You can throw thousands of pounds at a symptom and never get rid of it without addressing the root cause.
Take a look at a bit of history. Roughly. The synthetic T4 (Levo, etc) was invented and Big Pharma went all out to destroy the reputation of NDT - which had been used sucessfully for over 100 years - and sell their new, inferior product.
It didn't work. Patients were still complaining about symptoms not resolved. Sooooooo Big Pharma invented the TSH test to prove it worked! (As we all know, on synthetic T4 the TSH soon goes down to fit into a bogus, so-called 'normal' range. But that doesn't mean that the T4 is being converted into T3, or that the T3 is getting into the cells...) And they said, look! Your TSH is now 'normal', you are cured.
But patients were still complaining. Soooooooooo they invented a few new 'diseases' to explain the fact that people were still suffering. Look, they said, it's nothing to do with your thyroid, because your TSH is in range. So, you've got Fibromyalgia/CFS/ME/IBS/bipolar... etc etc etc.
And the Big Pharma salesmen were soooooooo good, that the doctors fell for it hook, line and sinker! And générations of patients suffered needlessly...
But, it doesn't stop there. Because once you have a new, vague 'disease', with no means of testing, no cure and not much of a treatment, you can blame it for anything! So that's what the doctors started to do. If it wasn't a broken leg that they could acturally see, it must be Fibromyalgia/CFS/ME/IBS... etc etc etc. Saved them a whole lot of time and effort! And costs the NHS a fortune!
And the problem with that is, that new doctors training today, have no-one to teach them what a real disease looks like. And they don't know the symptoms of a real disease - be it thyroid, Lyme, adrenal fatigue, etc. They only know to lump anything other than a broken leg - which they can actually see - Under one of the headings above.
So, the future looks bleak. Big Pharma is trying to rule the world and sell its nasty drugs to everyone - not just the sick, but everyone (look at statins!). The Wise old docs are dying off and there's nobody to replace them. So, cases of Fibro, etc, will become more and more frequent. And now societies set up to help people with these syndromes are making money out of the new 'diseases' and don't want anybody to find the real cause. So, patients continue to suffer needlessly...
OK, so that's my take. Disagree with me if you like. It's maybe a bit exaggerated, but only a tiny bit. But I'll say it again... Fibromyalgia and CFS are not 'diseases' in their own right. People suffer, yes, I don't deny that, but that does not make them 'diseases'. They are syndromes. Syndromes are caused by an Under-lying problem which should be sought out and treated...
But I'm beginning to repeat myself. lol So, I'll stop.
I accept that CFS DOES exist as a (collection of) symptom(s) of an untreated condition (which probably goes onto affecting metabolism & Thyroid function). - Monty Pythonesque or wot?
And therefore why I refused a diagnosis of something I won't get better from, or even relief from, or real treatment -except imaginary treatment as my feelings aren't real of course... unless I sort it myself.
This is the whole problem of the term 'CFS' which was invented by the CDC in the 80s as a response to the M.E. outbreak in Lake Tahoe. Insurance companies didn't want to pay out for so many patients, and with a diagnosis of 'fatigue' they don't have to. The term chronic fatigue syndrome/CFS is pure invention which unfortunately and deliberately has been tagged onto M.E. for the purpose of financial gain by various vested interest groups. M.E. has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder and is classified in the current WHO International Classification of Diseases with the neurological code G.93.3. The classification was brought about through the work of Dr Melvin Ramsay and Dr John Richardson, who demonstrated that, by use of SPECT scans, M.E. patients have hypoperfusion in the brain, particularly the brain stem, anatomical changes in the brain similar to MS which show up on MRI scans, and widespread inflammation in the central nervous system. It is why the disease is called Myalgic Encephalomyelitis. My = muscle, Algic = pain, Encephalo = brain, Mye = spinal, Itis = inflammation.
'CFS,' on the other hand, describes nothing because fatigue is a SYMPTOM of many different illnesses. You deserve a correct diagnosis. You either have M.E. or you don't, but you mustn't accept a diagnosis of CFS when you don't have M.E. as that is what is hindering M.E. research. You deserve to have the cause of your fatigue thoroughly investigated.
M.E. is caused by an enterovirus and is ALWAYS of acute onset. If your fatigue has been of gradual onset, you won't have M.E. I'm afraid the CFS Clinic will be a complete waste of your time. They will advise GET (graded exercise therapy) and CBT (cognitive behaviour therapy). GET because, of course, you are a lazy cow who just doesn't move about enough. Just increase your physical activity and hey, presto everything will be solved! CBT because you only THINK you are poorly, and you must get out of the habit of thinking your entirely imagined symptoms are real!
If you have M.E., it will show up on a SPECT scan but don't expect your GP to investigate this as they follow the bogus NICE guidelines for 'CFS' - something which doesn't even exist except for in the minds of some very dodgy psychiatrists - and it is far cheaper to tell you to "just try moving a bit more" and "get over yourself" than it is to refer you for costly imaging tests.
'CFS' is a 'wastebasket diagnosis' - when your GP can't be arsed to investigate the cause of your fatigue they use 'CFS' as an umbrella term. GPs receive incentives to reduce referrals and investigations, so 'CFS' is a handy scapegoat for lazy doctors. 'CFS,' despite not even being a real thing is thought to be entirely psychological in nature thanks to the unscrupulous Simon Wessely and his 'Wessely School' - they have deliberately aligned M.E. with 'CFS' in the UK to purposely perpetuate the myth solely for their own financial gain. They are the ones who came up with GET and CBT for a neurological illness. These therapies have been shown to be only moderately helpful for psychiatric disorders like depression and anxiety, but downright harmful for M.E. patients.
I would love to hear back from you whether your fatigue was of acute or gradual onset, and whether you have any neurological/CNS symptoms. From what I can decipher from what you have written, you don't have M.E., which may I say means that you should especially not accept a diagnosis of 'CFS' because it causes problems for M.E. patients everywhere when patients who don't have M.E. are used in research studies of M.E.!
If you have anxiety, then ask for a diagnosis of anxiety and ask to have it investigated. But for the sake of M.E. patients everywhere, please reject the diagnosis of 'CFS' if you don't have M.E. otherwise they will tag you 'CFS/ME' and it would be an incorrect diagnosis.
You would find it extremely helpful to look at hfme.org - it can tell you everything you need to know about receiving a diagnosis of 'CFS.'
I concur with what you say - I suddenly became very ill when I had acute tonsillitis back in 1989 and was eventually diagnosed with ME. I had been an extremely active young woman studying for an MA, about to start jazz dance lessons and had just 'fallen in love' when wham! everything changed overnight. I was sleeping 16 hours a day, had muscle pains and aches, gastrointestinal problems, brain dysfunction and put on a huge amount of weight.
The longer it went on the more hopeless the situation seemed to be - so it is not surprising that people with ME get depressed! It feels as though there is no future. Everything is lost so you go through multiple bereavements and depression <as a result of the illness not as a cause of it>.
Thankfully I did begin to recover gradually. I am 80% recovered but still struggle at times.
Having said all of this I'm convinced that a large part of it was related to the thyroid. My TFTs are all in range, but the values are considered by many on this forum to point to hypothyroidism. I'm currently awaiting tests for adrenal function.
I'm waiting for the short synacthen test - apparently there is a worldwide shortage! I would have the saliva tests but the endo is very sceptical. It's such a problem having the majority of the medical profession against such tests.
Hi Ann. In M.E., thyroid abnormalities commonly develop several years into the illness. Considering you have been ill since 1989, then thyroid problems would not be surprising. Have you had a thyroid ultrasound scan? Thyroid malignancy affects 1 in 100,000 of the general population, but 6,000 per 100,000 M.E. patients, so there is increased risk. I am pleased to hear you are at 80%.
And here is the published paper - alasbimnjournal.cl/alasbimn... - Thyroid malignancy association with cortical & subcortical brain SPECT changes in patients presenting with Myalgic Encephalomyelitis.
I was diagnosed with Fibromyalgia but thyroid labs kept coming back normal. I had all sorts of bizarre symptoms, even my legs would just stop working - like the battery bunny. A lot of experts reckon CF and FMS are the same family but FMS tends to be more pain with fatigue and visa versa for CFS. Since taking thyroid hormone (NDT) my FMS symptoms have gone from incapacitating to actually being able to work again, albeit it slowly. I think I had adrenal issues too from a certain set of symptoms I noticed including looking down at my nips one day to see they were circled in a bruise/black colour...W** is going on now!...which is pretty well characteristic of these metabolic or autoimmune disorders. I'm not firing on all fours yet but I believe quite a bit of damage was happening whilst I was left to stew with a FMS diagnosis when, actually, I had a metabolic disorder.
I am also on a UK FMS site, on face book, and someone asked how many had been dxd with hypothyroidism during their FMS...well, the list is huge and still growing.
I haven't had the adrenal test yet, but on my wish list. I take it all your thyroid levels are in range. I feel best when my TSH is suppressed.
I agree with reallyfedup below, and Sandy, I believe I was that person. Try to keep stress levels down and ride the bad days....easier said than done. I know I get into worse state when I fight it.
I was ‘diagnosed’ with CFS. I would say no, it does not exist in the sense that it is an ‘illness of unknown cause.’ I say ‘diagnosed’ but you CANNOT ‘test’ for CFS. You should only be given the diagnosis only after every other possibility is exhausted. In my case it was not. Every test came back with a borderline raised TSH, or a raised TSH. They chose to ignore that. Thyroid antibodies came back raised. They chose to ignore that. They sent me to lots off different consultants EXCEPT an endocrinologist. To top it off, not once did they stop to check if I had a vitamin deficiency or a hormone problem! I had one specialist who wrote to my GP stating ‘ I believe she is suffering from sort of autoimmune disease, her TSH is consistently raised but still within the normal range (at that time the top of the range was 6, my TSH was 5.98 to 7 at times) to label her with CFS is a very unsatisfactory diagnosis and will not be helpful to her...’ Boy, was he right!
I have just posted about my last experience at my GP yesterday ( if anyone wants to read it and comment). Personally I think being mis-diagnosed with CFS is detrimental and dangerous. I went to the CFS clinic and had to go on a course. All the time I thought ‘what am I doing here?’!
As part of my CFS ‘treatment’ I was sent to an endocrinologist who immediately put me on Levo. I also received a loading course of B12 injections as par the course. Both these treatments were like magic. I had recovered from CFS!
The endo wrote to my GP, stating ‘I beleive her previous symptoms were not due to CFS, but an under medicated hypothyroid condition, and she probably has a low T4 to T3 conversion rate.’
They chose to ignore that. For the last 12 years I have been labelled as having CFS. For a while I believed them and gave up, researching an ‘illness of unknown cause and no cure’ is a very depressing route to go. When I finally got the Levo up to the right level, I realised it was thyroid all along.
However I am now 12 years on from when I got ill. 6 years of those I was untreated and thought I would rather die than live the life I had with no hope for a cure. These last 6 years, since thyroid treatment, I have been pretty good, certainly not symptom free, but at least I am functioning. However as life has its ups and downs I experience good and bad. And that is because my body relying on optimal vitamins and a responsive thyroid. However, mine relies on an unvarying synthetic dose, so of course I am not going to feel 100%. I have learnt so much in the last couple of months on this forum (all positive and hopeful) then I ever did with a diagnosis of CFS.
What is scary is it’s only the last few months I have started compiling all my blood tests and letters from all the ‘experts’. It is scary reading. It is obvious I had a thyroid problem but I did not fit the ‘lab’ ranges. Many questioned it, but the CFS diagnosis has stuck. Certainly in my surgery, and it has affected travel insurance and mortgages!! Every symptom I have now is dismissed as a CFS flare up.
I would say my illness ‘started’ after a very difficult birth, and subsequently several major abdominal surgeries, which was extremely emotionally and physically traumatic. One of the experts verbally said to me that that time probably caused an autoimmune response which attacked my thyroid. That makes more sense than the gobbledygook the CFS clinic spouted at me for 6 weeks!!!
My advice is accept there is no quick fix. You will probably never be 100% like before, but you could get close. And I personally I would not except the CFS, it has been like a millstone around my neck.
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