CFS/ME Found Worse Than M.S., Cancer, Diabetes etc.

[HEA72]

cortjohnson.org/blog/2015/0...

Some research has been released this week by a Danish research group (link to article above) stating that CFS/ME has the lowest score re quality of life compared to other illnesses e.g. M.S., cancer and diabetes!

I've posted this article because many CFS/ME sufferers have hypothyroidism, either as the total cause of their symptoms or at least contributing towards them.

I can relate to this article being diagnosed with hypothyroidism and mitochondrial failure by a helpful doctor from the TUK doctors list (I was unhelpfully given the CFS/ME label by a GP). I've often actually thought I'd prefer to have had one of the other said illnesses (dare I say it!) over mito failure/hypothyroidism, because of the level of understanding and care in the medical field and community about M.S., cancer, diabetes in the UK. There's infrastructure in place to support the patient and families of the patient with these illnesses. With CFS/hypothyroidism there's virtually nothing at all! As I'm sure you're totally aware of.

Our illness is not given the publicity or education that the other illnesses have. Why? I guess it's down to lack funding. Why have we been left behind? Thankfully Thyroid UK's doing what they can to help. It's utterly appalling the little help and support we get in mainstream medicine and society. The lack of belief within most medics and the public at how utterly terribly ill one can feel with this illness. It's shambolic! Here's wishing a Prime Minister of our's would have it, I bet things would change then! It's about time this changed and we got the respect and support we so deserve. Many of us have lived through HELL and the so sad thing is we've had to live in silence with it too.

And I could go on but I'd better stop there. I think PMT might be erupting!! Feeling very vocal this week. Maybe my thyroid area's having a good cleanse!! "speaking my truth"

[Heloise]

Hi Hea, I certainly hear what you are saying. I was in your place twenty years ago and after much deliberation I'm sure of two things. Allopathic medicine is firstly a corporate structure. Do you recall when doctors began incorporating? (more than thirty years ago at least). Raising money for certain diseases is very profitable, especially if you do NOT cure the disease. In reality funding can come through the military or the National Institute of Health if the country has one and used for their own agendas.

I would only see an allopath if I had an infection or a broken bone.

[HEA72 in reply to Heloise]

Good point, I guess mainstream doctors see hypothyroidism as an easily curable disease, so what in their eyes would be the need to raise awareness of it?!: 'you take your one simple TSH blood test, administer levothyroxine - job done!!' Except we patients know it's not as simple as that. Also the doctors most likely don't realise the number of patients with hypothyroidism is actually far far greater than their numbers tell them, due to very poor diagnostic testing.

Meanwhile the poor other patients get shoved away on the 'CFS/ME' pile and left to 'manage' their symptoms. Because the NHS is at a loss of what to do with them.

There are a lot of deaf ears in this mainstream field.

You've got a point, just imagine if there was a cure for cancer and M.S etc,? all those people out of work as a result!!! Like the police force and security empire never wanting a crime free world!

Interesting about where you say funding comes from.

Grrrrrrr

[Heloise in reply to HEA72]

I'm sure there is a lot more of which we are completely unaware, if you haven't seen the documentary "Sicko" you'll see how health insurance began and for what reason. We have to knock a few things off their pedestal and take more responsibility for ourselves. I know it's a big step.

[Hypopotamus]

Observing the lifestyle of people with cancer/diabetes, and even MS, they mostly appear to be able to continue a better quality of life than I have endured with what is diagnosed as ME. And, as you point out, those condition at least appear to be taken more seriously than ME/CFS.

By coincidence, yesterday I was sorting out some old paperwork to throw away, and I came across a letter that a former GP had written to the Department of Work and Pensions (as it was then) detailing some of my symptoms, but telling them that my major problem was anxiety. This was years after two blood tests had shown that I was hypothyroid, and he had told me (each time) that my thyroid was "normal".

[HEA72 in reply to Hypopotamus]

Gosh you poor thing Hipopotamus, you and many others in the same boat. It is so wrong that patients are left to feel this way. I do hope you find the resolution that clears the path to good health for you.

[Hypopotamus in reply to HEA72]

Thanks, I have taken a big step in realising that I am my best doctor. Now, if only they would give me a prescription pad (and a super-fat salary). LOL

[Polaris]

My sister was misdiagnosed with ME/CFS for years and then dementia - it turned out to be severe B12 deficiency.

Martyn Hooper of the PAS spoke in the House of Lords in June of this year:

"Many of the members of the Pernicious Anaemia Society were originally told that they had CFS/ME because their tests results came back showing no B12 Deficiency and No Intrinsic Factor Antibodies. The new guidelines state quite categorically that the current serum B12 test should be ignored if the patient has all or some of the symptoms of Pernicious Anaemia and the patient should be treated using replacement therapy injections of B12. Likewise, just because a patient’s blood work didn’t show any intrinsic factor antibodies doesn’t mean that he or she doesn’t have Pernicious Anaemia rather the patient could have negative antibody pernicious anaemia – NABPA.

We know that very few GPs have read the new guidelines so just how many people whose blood tests indicated nothing wrong were then told that their symptoms were due to CFS/ME? Probably many thousands and that is what I will be talking about on Tuesday."

b12deficiency.info/b12-writ...

cmim.org/pdf2014/funcion.ph...

[HEA72 in reply to Polaris]

That's really interesting Polaris. Do you know what reliable test there is for pernicious anemia?

[Polaris in reply to HEA72]

If you read the BMJ research document given above, it gives details of the various tests but, in fact, there is no completely reliable test and all the HSBC and UKNEQAS guidelines advise treating neurological symptoms without delay as there is a short window of opportunity before symptoms become irreversible.

The research document has a useful summary if GP won't read the full document.

My sister made a good recovery but has some permanent damage because treatment was delayed,

[HEA72 in reply to Polaris]

Thank you. I've just been reading some further information here: patrickholford.com/advice/c...

(which you probably already know as you seem very well informed) but this paragraph was interesting:

"By far the most common complaint by people with pernicious anaemia is about the frequency of the normally prescribed treatment regime. Injections of B12 are only available on prescription in the UK, Australia and North America. In mainland Europe, they are available over the counter in pharmacies. Injections are usually, though not always, prescribed once every three months in the UK. This is hopelessly inadequate for a great many patients with pernicious anaemia, who often resort to buying injections from European pharmacies and injecting without the knowledge or consent of their doctor. Others buy from unregulated internet sources with the potential dangers being overlooked. Some receive massive doses of the vitamin via an intravenous drip from doctors working outside the NHS – just like many celebrities. Sadly, many patients who feel they need more frequent injections are refused these by their doctor and are instead prescribed anti-depressants.

There are other ways in which B12 supplementation can take place – even for those with pernicious anaemia – and these include nasal sprays, skin patches, sub-lingual tablets and drops and even ointment. The efficacy of these alternative treatment regimens has not been evaluated."

I feel could do with some B12 and magnesium injections. I take supplements but I still seem to be deficient in them. I'm hoping to see a private doctor who gives these injections if deemed beneficial.

[Polaris in reply to HEA72]

Lots of info on the PA site here about B12. Many people self inject successfully because of the difficulty in getting GPs to recognise symptoms or treat according to guidelines. The serum test is also set too low - deficiencies begin to appear in the spinal fluid below 550 pg/ml

I notice from a previous post that your B12 serum test result was over 1,000, but there are many reasons why a person may have a problem absorbing - B12 has to go through a more complicated process than other vitamins to be absorbed and the serum test only measures B12 in the blood, not the tissues.

My sister has monthly B12 injections and we both supplement with Jarrows Methylcobalamin 5000 mcg sublingually but be aware that supplementation will skew any further tests.

[HEA72 in reply to Polaris]

Yes I supplement with methylcobalamin and adenosylcobalamin because I seem to have a problem with converting the B12 into these chargeable forms. So if my B12 is reading high, does that mean I don't have pernicious anemia? Sorry if this sounds like daft question!

[Polaris in reply to HEA72]

Not a daft question at all. Your reading will be high if you've been supplementing, and will skew any test. High folate can also mask B12, etc. Once treatment begins, blood tests are no reflection of how effective the treatment is going, it is the condition of the patient that matters.....

Martyn Hooper has PA but tested negative for Intrinsic factor and self injects. He is about to have another book published on PA/B12. I'm afraid you have to research intensively to be able to fight your corner or self inject.