My question as above is: what tests are necessary to rule out similar conditions to get a firm diagnosis of ME?
My background is that I had a sort-of diagnosis of ME about 30 years ago from my then private osteopath. Medical NHS doctors had refused to diagnose anything except "stress" despite me being terribly ill. There was no internet then with all the info and support groups so I struggled on, initially with family support (although they believed the doctors) and complementary therapies.
I'd been self managing for years with slow overall improvement, but lots of ups and downs, until about 10 years ago when health issues escalated once again and I was forced to seek medical help.
The problem I had going back into the medical system was that I had never had a formal diagnosis, so every time I saw a GP I had to try and go through my lengthy medical history again (in ten minutes) and was met with varying degrees of disbelief.
My current GPs are better, and accept that I 'probably' have ME, but when I asked for a proper diagnosis they said I was 'asking too much.'
So - can anyone point me towards this information? - TIA.
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Frodo
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To be honest most tests just rule things out. Suggest you find out where your nearest specialist clinic is and ask for a referral to there. To be fair most gps wouldn't diagnose ME but need encouragement to agree to a referral.
I was diagnosed a long time ago by an immunetologist (I know not spelt right) attached to a specialist clinic. More recently I have been seen in a specialist clinic headed by a neurologist.
I suggest that you book a double appointment with your GP and take with you a list of all your symptoms.
I did this and my GP immediately spotted it. He then had to run lots of tests before he could refer me.( He had a list on his computer and I think it is possible to find it online if you search enough) In my case these were all clear and that is the criteria for a referral.
Doing a list can seem like a real pain in the proverbial to do, but it really is worth it, even if you don't have ME.
I have found that I have over the years been able to put together a history of my road to ME and a kind of ongoing diary of all my various resulting issues and treatments and tests etc. It's now an essay a couple of A4 sides long which I just keep adding to as things 'progress' or change.
It comes in really handy for speaking to any GP, consultant or medical practitioner that doesn't know your history. That way you are always giving everybody the same story as well and you don't miss bits out. Also comes in really handy when filling in DWP forms if you need to claim for anything. xxx
I'm guessing that when they said asking too much that it was a (fairly sarcastic) way of telling you that there is still as yet no way of directly testing for ME. Though things in the research world are moving on a pace (well compared to previous years) so there is some hope on the horizon.
All the GPs or consultants can do is go through your previous history, all your symptoms and your circumstances etc. From that they can produce a list of possible conditions and then start testing for all those conditions. Once they have all been eliminated then all they will be left with is ME.
Sadly this process can take around a year to go through give or take depending on just what your symptoms are and therefore how long the list of possibles is. This will be things like blood tests for all sorts of things, in my case I had scans and biopsies and ultra sounds and endoscopies ruling out all sorts of things.
Just bear a couple of things in mind though when speaking to your GP. Firstly, the GP must go through that list before they can give a diagnosis so they should not refuse to do so. Try not to worry about it and look at it as if you are lucky enough to be getting a full MOT and will have the peace of mind that you don't have a whole list of things.
Secondly, if your GP is still not confident enough to diagnose ME, then ask for a referral to your local ME clinic. Insist if you have to. But don't expect too much from the clinic. Most of them are only able to confirm the diagnosis and maybe give you some advice on pacing, but very little else. Certainly nothing of any use.
Hope you get some answers soon, gentle hugs, Margaret. xxx 🤗🤗🤗
Hi Frodo, although I was diagnosed with M.E 2 years ago I am not convinced. Once I had the usual scans and blood tests to discount cancer and MS the diagnosis was given. I was more or less told, it's M.E suck it up and learn to deal with it. Since my symptoms have changed over time ( and I'm getting more desperate!) I used my savings to have some private tests done-these have thrown up some anomalies, so for the first time in 2 years a doctor at my surgery is willing to investigate further. I am now being tested for the following( all of which mimic/have similar symptoms to M.E).
-Lymes disease
-Cushings
-Toxic levels of zinc/lead
-Hypothryoidism
-Hyperparathyroidism (had this 10 years ago)
-Glandular fever
-full liver/bone profile
If you want to be fully tested, you need to be proactive and don't take no for an answer-very hard to do when you feel so terrible! Hope this helps. All the best.
Thanks tickeyland - yes, I'm not convinced either. It wasn't even a medical diagnosis in the first place. I'm fairly sure B12 deficiency played a part, and possibly an accident I had about a year before affecting my spine. I just hadn't realised until a few years ago there were so many other things it could be, or that those things hadn't been tested for in the first place.
One problem as I understand it is some of the tests being inaccurate, resulting in being told you are 'normal' when you are not.
I have also read that chronic Lyme disease is often not picked up in the UK.
I know what you mean about some tests not being accurate, particularly the lymes one. The doctor has said he will do the ELiSA first and then follow it up with the western blot. I have read that as many as 50% of Elisa tests that come back negative , but are then followed up by a western blot showing positive. Doesn't exactly instill you with confidence!!Time will tell!
When I mentioned Lyme disease as a possibility to my previous GP she was absolutely scathing and literally laughed in my face. "You!" she said. "Why would YOU have Lyme disease? Have you been near any ticks?"
Actually, yes. Both in the countryside where I'd been living, and my parent's dogs frequently picked them up.
I'm so sorry you have had this experience. It is soul destroying when you have no real answers and no-one seems to really care until things get really bad. I have been told in the past as the hospital tests came back clear that there "couldn't be anything wrong, and maybe you just needed to accept it' all in your head!! I too live in the countryside and prior to becoming ill I was on a get fit stint. I went walking most weekends across fields sometimes with bare legs. I'm really hoping it isn't Lymes-from what I understand if it's not treated with antibiotics pretty quickly it becomes a long term chronic problem which no-one seems to know how to treat. Is it worth going back and seeing another GP? As i say this is the first time in 2 years a doc has taken me seriously enough to take action.
Same here, my GP and an M.E. specialist laughed at me when I asked about Lyme. I was told by the specialist that people read too much on the internet these days! Perhaps he hasn't read enough!
And that's why we need an official list of conditions that it's mandatory to have ruled out. It's just unbelievable that medics get away with this kind of behaviour.
I'm assuming you're female (as I am, despite profile pic) - I really doubt doctors would laugh at a man in a suit. It's gender bias in action. They don't really believe we are as ill as we say we are, which they generally do if it's a man complaining, but instead they assume it's some kind of female neurosis.
Hi there, I am new also. I will try to make this as short as I can. I have another condition (common variable immunodeficiency, part of that is having fatigue, however, my fatigue has become more extreme as the years have passed and I am struggling more and more to be able to function properly) . I spoke to my immunologists and they told me to have a word with my gp. I did just that and he referred me to an endocrinologist. He gave me all of the usual blood tests and he also gave me a synacthen test, which he said if it came back normal, then I will definitely have M.E on top of having the CVID. I had the test done and it turns out that I do have M.E as well. I would go back to your gp and ask to be referred to an endocrinologist. If the doctor isn't helping you, I would suggest, if possible to find one that will actually listen and take you seriously. Don't give up.
Thanks Rosealinea. I hadn't heard of CVID before - it doesn't sound good.
I have seen an endocrinologist - but I was referred for unusually high cholesterol, which was thought to be a genetic condition (turned out not to be but no explanation, and not diet/lifestyle related) so I didn't make the most of the appointment regarding ME/CFS.
He referred me for the synacthen test and the result was ok.
He referred me for the test, he said, on the basis of my skin colour which at the time had become quite yellow. After a lot of extensive research, trial and error (on my part) it seems that was most likely down to a B12 deficiency which wasn't picked up due to the abysmally inaccurate testing and a low 'normal' which is set too low.
Yellow skin and unusually high cholesterol are also hypothyroid symptoms and I've had numerous other symptoms which are absolutely classic low thyroid, but test results for that are completely normal. The thing I really can't manage is the terrible headache/migraine.
Sorry for very long reply! I wish you well and hope your health improves, or at least that you can find ways to manage it as well as possible.
Wow, yep They thought my high cholesterol was genetic, (my diet, exercise regime and weight and all were good), turned out it isnt. Yep hypothyroidism too. I also developed pernicious anemia, then the lack of energy was finally looked into. And hey presto, diagnosed with M.E. How I wish I knew then what I know now. It seems there's so much staring the medical profession in the face and nobody's doing anything about it. Why is everyone ignoring Lyme? In this day and age people travel the world, get bitten by all kinds of bugs abroad and in UK.
I'm very disheartened.
Oh and yes Frodo, I am female and the GP I have at the moment is so patronising I feel sick when I have to see him. I asked his opinion about leaky gut. He had a trainee doctor in with him and he said there was no such thing! Made me feel ridiculous.
Apologies for not being in touch sooner. Lots has been going on. The best way I can describe it is that I do not have a functioning immune system at all, it makes me highly susptable to all kinds of nasty's, I have to have treatment, which gives me a weekly temporary immune system. It is very rare and will have this for the rest of my life, there is no cure. If I didn't have the treatment, I wouldn't be here any-more. Hate it.
They certainly seem to be good at not giving explanations, that for sure. It seems to be happening a lot lately. I really hope that they can give you some answers and soon. There is nothing worse than having to wait. That is quite interesting, I have to admit though, I am surprised that they don't test for these kinds of things as soon as you are born, or even once you are a bit older. Especially when there is something genetic or has the potiential to be.
Ah, that makes a lot of sense, are your headaches getting any better? Thank you and you to as well.
hello.I haven't posted on here before.(I've had attention on my other health issues) but I wanted to add,that because of my recently new found condition, I have realised that sometimes ME or fibromyalgia is diagnosed when maybe other conditions are undiagnosed?...That's not to say it isn't ME or fibro, just that it may also (or instead) be something else that has overlapping symptoms making it very difficult to diagnose.
In my case,I was diagnosed with fibromyalgia and cfs (which any condition can have cfs but ME is different condition) 7+ years ago. I've always had other symptoms and clinical test findings that didn't fit it, but no doctor added the 'undiagnosed symptoms' to anything other than my originally diagnosed fibro. Or if they did it was a questionable condition in relation to kidneys and thyroid because of test results, yet still put down to likely being fibro because they couldn't see anything else...
My son was diagnosed with ME at seven and had many years of severe illness and disability..Anyone with this illness knows how terrible it is and the challenges you are faced with to receive the correct care and understanding from medical professionals..It has been a total nightmare and a story for another time...
Thankfully 10+ years on he is so much better and participating in life when possible.He still suffers various symptoms, but due to a recently new diagnosis I myself have had- hypermobility EDS- It has become apparent that my son also has the same.. ehlers-danlos.org
This means, that the 'extra' symptoms he and I have endured and not had recognised or understood, have most likely been connected to the hypermobility EDS condition (I am newly learning about it)..I am also not fully diagnosed for a third condition- vasculitis- but it means that finally now after all these years, the dots are being joined up..Yet still the battle for understanding, appropriate and correct treatment goes on...
So I would say, if you feel something else is going on aswel (or instead of) then don't give up on getting your answers, because there may be treatment or another approach to it that could make all the difference..We're just at the beginning of knowing, and finding the answers to put the pieces together is already helping..
You're absolutely right, I think in the majority of cases there is something else going on, chronic fatigue is one of the symptoms not the disease itself.
Hi all I'm new here as GP thinks I may have ME. I've been fully tested for hypothyroidism, B12, anaemia etc to try to get to the bottom of my ongoing exhaustion and bouts of dizziness etc and the only test that is out of range is Bilirubin which is consistently high on every test. GP said offhandedly "oh that's just Gilbert's Syndrome which is symptomless" but having researched it the vast majority with it seem to experience the same symptoms as ME/CFS. Worth checking what your bilirubin levels are as if it is high in the absence of any other abnormalities on your LFT's then that points to Gilbert's and could explain a lot. Sadly GPs don't accept that it causes these symptoms but how can so many sufferers be wrong when we all share the same common factor and struggle with the same issues?
I wish the medical profession would actually take on board the experience of patients.
Remember that you can have B12 deficiency/Pernicious Anaemia while the test result is within the 'normal' range and it shares many symptoms with M.E. so worth double checking. You can have many of the symptoms without actually having the anaemia.
My GP eventually said I probably have M.E a few years ago after carrying out tests for other things but in my experience, Dr didnt know what to do with me and though seemed quite happy to tell me I had M.E, has been no help whatsoever since then whichever Dr I have seen at the practice despite getting worse and worse. Not one dr is prepared to give me any paperwork supporting this so I believe I have been given what is often called a trash can diagnosis, M.E and it has bought about a deterioration in my health that has gradually removed everything I love one by one. I now have trouble walking and cannot stand for more than a minute without feeling weak, dizzy and sick. Nothing in my body works. It still means I am ill whatever you call it. M.E, Fybromyalgia etc etc and there is no help.
A little while ago, I decided to get copies of all my medical records as I was sick of only ever being offered anti depressants and wanted to see what the Drs say about me. I discovered that for ten years, Drs have made very few notes for my appointments but a repeating pattern is and I quote 'worries a lot, over anxious, seems depressed' as well as discovering that my TSH has been high for nine years. Whenever I have had blood tests done, I either hear nothing or I get a call that says all tests came back normal.
I saw a private Dr after getting tested privately and within two minutes of being in his office while I was trying to get my breath back, he asked me if I was hypothyroid. By this time I already knew I was and learnt a great deal from several books over several months. My 2 A4 pages long list of symptoms and private blood tests only underlined this diagnosis, he said. Not once had an NHS dr mentioned hypothyroidism to me so my conclusion is that they are either incompetent or don't care. For ten years, that is not just one mistake, it is downright negligence. I am now at rock bottom but have lost faith in GPs. There's a long way for me to go but I can now feel my hands and am not cold all the time (the first noticeable improvements) due to being treated correctly. I hope to improve a lot more with time. The new Dr after tests has confirmed Hypothyroidism, POTS , Adrenal Fatigue and several other things and he is already helping me.
I'm so glad for you that you finally have a proper diagnosis and treatment, but your story fills me with utter despair at the way things are with the medical profession and these kinds of illnesses.
Sadly, my story is common. Not just here in the UK either but the world over. My long post was written out before I noticed that your original one was posted a year ago, can I ask how things are with you now? Lots can change in a year and I do hope that you found some support from the medical profession eventually and perhaps even made some progress . . . .
Some progress in that I diagnosed myself with B12 deficiency and my GP was prepared to accept this, although the test (known to be inaccurate and flawed) was within "normal" limits. I think that was the initial problem years ago when I first collapsed - it all fits. Had I been treated then, I doubt I would have gone on to develop long term chronic problems.
However I don't think it's the whole story.
B12 injections have helped a lot. The other thing I have found helpful, after trying every supplement going, is a herbal Cox 2 anti inflammatory (I react badly to NSAIDs and aspirin). I seem to have more energy, less joint pain and less frequent and intense migraine. But I've had an increase in nausea episodes, may or may not be related.
Have just had a lot more tests related to auto immune disorders which have mostly come back "normal". However, I stopped eating gluten several years ago (improved quite a lot) and I have read research that indicates doing so can 'turn off' auto immune antibodies.
Because of my symptoms and the way they manifest, and family history, I'm thinking it's most likely I have auto immune issues.
I haven't heard of a herbal cox 2 anti inflammatory. Your journey is complex but like me, you are having to do all the work in order to improve.
It is complex but I can't help feeling that if we as patients are capable of learning the complexities of thyroid problems, there is no excuse for the medical profession to be negligent. All I keep hearing about is that they don't learn it in their training . . . Well it's about time they did and keep learning too!
Ibuprofen was on the list of things to avoid that my good dr gave me. I had been living on them though the pain has only got worse over the years. Now I am not taking them and the pain has diminished several degrees!
Like you I too omitted gluten and also wheat for now. I have seen Improvements already but there's a long way to go and I am learning everyday.
My M.E. was diagnosed by exclusion I.e. everything else tested normal.
I was tested for everything including sleep apnoea, thyroid function, rheumatoid factor, lupus, coeliac, sjogrens, the list is pretty endless. Your gp needs to access the new bmj criteria for ME/CFS diagnosis published in 2017 and the fukunda criterion are also useful. Also get advice from the charity Action for ME.
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Feel shaky when or just after had some energy
ME research of note: Contrasting ME versus CFS or 'CFS/ME' by Leonard A. Jason et al
Fed up 😔
What was your experience at the doctor on diagnosis?
CFS Relapse