I will start by stating that (in my opinion) ME/CFS/Fibromyalgia do not exist as illnesses in their own right. They are a set of symptoms – a set of symptoms that need proper diagnosis and proper treatment if you are to improve. I don’t say that lightly. I have been ill for fourty years, since I was 20. When I was 56 I was “diagnosed” with ME and when I was 57 I finally started to find out what was truly wrong.
If you are prepared to accept any of these diagnoses, your doctor will be happy to let you “have” the condition and you will receive no further testing and treatment to help you improve. You are more likely to be put on a cocktail of drugs to control your symptoms which will ultimately lead to further deterioration.
I don’t know why so many doctors are prepared to leave their patients undiagnosed and untreated. I only know that they are. This is an international scandal and one that most doctors are party to. Whether this is intentional or not I have yet to work out.
What I do know is that ME is a self-perpetuating myth. Doctors want patients to have it – it’s cheap and requires no treatment and no testing. More worryingly, a small number of patients WANT to have it. Maybe because there is a certain kudos attached to having an undiagnosable, untreatable disease.
If you are reading this, please please please don’t be sucked in by your doctor’s suggestion that you “have” ME or CFS. You don’t. You have a set of symptoms that need proper diagnosis if you are to improve.
ME is meaningless. As a very well known doctor in this field says: myalgic = pain (which is common in adrenal/thyroid/Lyme Disease patients) and encephalomyelitis = brain inflammation (from which you either recover or die!). (I used to have a link to his talk here, but sadly it has been removed) It’s a meaningless name for a non-existent illness.
Fibromyalgia is not a diagnosis any more than “headache” is a diagnosis. It is a symptom of an underlying condition that needs to be diagnosed and treated.
Don’t suffer as I did for 37 years. Get a proper diagnosis (which you might have to do for yourself via forums) and start getting the right treatment to help you improve.
It is NOT a coincidence that the symptoms of ME/CFS are THE SAME as poorly treated/untreated thyroid and adrenal problems. It is not a coincidence because this is what ME/CFS are for the majority of patients. The problem is that many have secondary or central endocrine problems. The NHS will rarely diagnose this as they believe that TSH testing (thyroid stimulating hormone) is the be all and end all. If you have secondary hypothyroidism this is because your pituitary cannot send the correct messages to your thyroid. Your TSH will not rise and your illness will be overlooked.
Is it Lyme Disease?
What causes these endocrine problems. Two words. Lyme Disease. I believe that Lyme Disease and/or it’s co-infections are responsible for the vast majority of cases of ME/CFS/Fibromyalgia and possibly many cases of MS/Parkinsons/Alzheimers and many other unexplained or complicated syndromes.
Lyme Disease has been called The Great Mimicker. It can cause almost any set of symptoms you can imagine, including major neurological problems including paralysis and psychosis. If you know anyone who suddenly develops psychotic episodes or unexplained paralysis, think Lyme.
The standard NHS is useless except for recent infections. Even then you are unlikely to be offered adequate treatment and may go on to develop chronic symptoms unless you educate yourself about effective treatments.
For effective treatment you will have to look overseas. I was diagnosed by Igenex in the States and now consult doctor Jess Armine in Philadelphia via Skype. There are several LLMD (Lyme literate MDs) in the States who offer Skype consultations, as well as many other Lyme knowledgeable practitioners such as herbalists.
Dr Armine will be running clinics in the UK in 2016. See HERE for full details.
Dr Armine also offers a comprehensive Lyme and co-infection testing service for the UK and beyond. I have to declare a financial interest as I am involved with designing the site and promoting it. There are currently two tests available. A basic Lyme panel and a fully comprehensive test that covers a variety of tick-borne diseases, viruses and candida. The comprehensive test includes a patient questionnaire to help with the diagnosis and an interpretive consultation with Dr Armine or a colleague. Go to Lyme Testing UK to order the test.
I have come to realise that a significant number of ME patients have already been diagnosed with thyroid problems. Usually hypothyroid (underactive) or with an auto-immune thyroid condition such as Hashimoto’s. They are put on thyroxine (T4). If they don’t improve, few doctors offer to raise the dose of thyroxine, do further testing or try an alternative treatment. No, at this point they give up and tell you that “it can’t be your thyroid”. Often followed by a diagnosis of the new, mystery disease SE, as in “it can’t be your thyroid it must be Something Else”.
They KNOW that it isn’t “Something Else” because no further testing or treatment will be offered. You will be abandoned to your fate, with or without a “diagnosis” of ME/CFS.
This is even happening to children. Children are being left by their doctors to be so ill that they cannot function, their childhoods ruined because their doctors cannot or will not acknowledge that time, thought and work is required to make an effective diagnosis.
Maybe this is the problem. Diagnosing the real, underlying disorder does take time, thought, work and testing. Unless you are very lucky, you will have to do this for yourself. Most doctors won’t do it.
There is no magic cure for your condition. Parts of your HPTA (hypothalamus, pituitary, thyroid, adrenal) axis are probably malfunctioning. You have to find out what those malfunctions are, what is causing them and start addressing them.
Should I Guess What Is Wrong?
If at all possible, the answer is NO. You could have an under-active thyroid, you could have an over-active thyroid, you could have low cortisol levels (produced by the adrenal glands), you could have high cortisol levels, you could have many other deficiencies. The symptoms are similar, so guessing is hard. Testing is the key. Click here to go to the Testing page. You could have Lyme Disease, you might have co-infections. You might be hypo-pituitary due to a head injury.
Adrenals and pituitary are the great, unacknowledged, keys. Even a minor head injury can damage the pituitary, yet few people are ever tested. A small growth on the pituitary can also cause endocrine imbalances. The pituitary runs your thyroid and your adrenals. If it isn’t functioning properly you can have both hypothyroidism and hypoadrenalism. Yet the NHS only acknowledge total adrenal failure. As far as they are concerned your adrenals have either totally failed (Addison’s Disease) or you are absolutely fine. They refuse to offer effective testing.
ME/CFS can develop as the results of a traumatic or abusive childhood. This doesn’t mean that you are suffering from mental difficulties and need a psychiatrist (although you might be and I am by no means dismissing the psychological effects), the long term stress of abuse in childhood damages the hypothalamus/pituitary/adrenal loop.
Many people develop symptoms following a virus. As I’ve said above, I believe a major, unacknowledged cause is Lyme Disease and/or co-infections. These can damage the endocrine system.
Start by getting all the tests done. ( Click here to go to the Testing page.) Write them on a piece of paper and take it to your doctor. If they try to wriggle out, try to insist. Most will try to refuse to test FT3 as many labs refuse to test it. Yet this is the most vital test. Why is it – read this and print it out for your doctor.
Track down your deficiencies and start to address them. For me it has been thyroid, adrenals, Vit D deficiency, Vit B3 deficiency and Lyme Disease. Treating my Lyme Disease has made a huge difference and has allowed me to reduce my thyroid and adrenal meds.
It’s complicated. Don’t give up. Read about your conditions and inform yourself. Take control of your treatment. Join some forums and Facebook groups. I highly recommend the forums at TPAUK.com or Thyroid UK or there are many excellent Lyme support groups on Facebook.
Look up John Caudwell, the founder of Phones4u. He is a billionnaire and has recently discovered that he and several members of his family have Lyme Disease. Including a son who has neuro Lyme and has major psychotic episodes. He is raising awareness of Lyme Disease.