A short sad history of ME/CFS

sunnyone

prettypeach wrote: »

No they're not.

Bloods are routinely done for symptoms which could end up being diagnosed as M.E. and which can also be symtptoms of deficiencies, but not bloods which test for vitamin and mineral deficiencies.

utter rubbish, if you need the tests thay are done but from your postings I can see why your gp dosnt listen to you and/or do any requested tests.

prettypeach_2

sunnyone wrote: »

utter rubbish, if you need the tests thay are done but from your postings I can see why your gp dosnt listen to you and/or do any requested tests.

No it's not utter rubbish.
You are making sweeping generalisations that are just not true.
'If you need the tests they are done'. You sound like you know nothing about M.E. and the way it is treated within the NHS.
The tests were done for your son, that does not mean they are done for everybody.
My NHS GP did not do tests for vitamins and minerals, he did what all NHS docs do and did all the general bloods and then referred me to a chronic fatigue clinic after all the blood levels were found to be within normal ranges. I was then diagnosed on examination and history taken.
Get your facts straight before you try to tell people what's what and what should or should not be done for them (without knowing anything about the people and what they've had done/requested to be done)!
:mad:

sunnyone

prettypeach wrote: »

No it's not utter rubbish.
You are making sweeping generalisations that are just not true.
'If you need the tests they are done'. You sound like you know nothing about M.E. and the way it is treated within the NHS.
The tests were done for your son, that does not mean they are done for everybody.
My NHS GP did not do tests for vitamins and minerals, he did what all NHS docs do and did all the general bloods and then referred me to a chronic fatigue clinic after all the blood levels were found to be within normal ranges. I was then diagnosed on examination and history taken.
Get your facts straight before you try to tell people what's what and what should or should not be done for them (without knowing anything about the people and what they've had done/requested to be done)!
:mad:

Get you facts and your attitude straight, NHS gps will do the tests if there is clinical need for them and with my son there are.

You arnt an expert in anything and you dont know how other people are tested/treated for any condition but from your persona here I can understand why gps treat you the way you claim they do.

prettypeach_2

sunnyone wrote: »

Get you facts and your attitude straight, NHS gps will do the tests if there is clinical need for them and with my son there are.

You arnt an expert in anything and you dont know how other people are tested/treated for any condition but from your persona here I can understand why gps treat you the way you claim they do.

You obviously don't know what you're talking about. I've not said anything about how 'GPs treat me' and certainly not to you, you're obviously making your own inferences. You're obnoxious and you're going on ignore now.

NEH

Mrs_P_Pincher wrote: »

I was diagnosed with CFS last year by my GP and an endocrinologist. It didn't take much digging through my blood results to find that I was actually servely deficient in stored iron, Vitmain B12 and Vitamin D. The B12 and the D are under control now and my health is much improved. If the NHS can sort themselves out and give me the iron therapy I need as I cannot take oral supplements, I might well be fixed in teh foreseeable future.

I was not prepared to accept a diagnosis of an illness for which there is no test, no treatment, and infinitely variable symptoms. To me CFS, like FM is a bucket diagnosis. Fibromyalgia just means that your muscles hurt. It is a symptom not a disease and in most cases the cause of that symptom is not difficult to find.

Mrs P P

I won't get into all the discussions on here but the tests for vitamin D that the NHS provide are usually not in depth enough to establish accurate vitamin D levels....I read it somewhere but at the moment i am bit woolly to be able to search for the article...

I would also reiterate that self medicating with vitamins can be harmful, i was told to be careful by the Pharmacist at Boots years ago and my current Specialist did a test for omega 3 and found i was very very low in it so i needed those supplements but that i was also taking far too much omega 6 which isn't good for you and which i was getting by taking a combination of evening primose oil and cod liver oil....Not al omegas are good for you. Even my hubby has been more careful as he was taking cod liver oil and the fish supplements, now that he has moderated his dose he does actually feel better...

Mojisola you're right about the pacing thing, it's learning what your body can and can't do and bascially taking the hint when you need to stop and slow down...

mardatha

Ask the gp about testing your vitamin D level. It must be possible because mine does, every 3 months. I take a high dose vit D3 and my doc checks me every three months because I don't want my levels to go too high. My level started at 21, went up to 51, am now at 85 and want to stay at this.
The UK standard basic level is 50, which was set in the 1920s to prevent children getting rickets. Thats all a level of 50 will do, is stop you getting rickets...its far too low. None of us in this country get enough hot sun every day of the year to top up our levels naturally, we all need to supplement. I learned about this on FluTrackers where there are a lot of doctors .

TOBRUK

NEH wrote: »

...

I would also reiterate that self medicating with vitamins can be harmful...

I agree NEH, a while after I was diagnosed with M.E. in 1997, I wouldn't accept it and really did fight against my body - I was in denial for a very long time. As I was feeling desperate I did try a few things and I did believe that taking vitamins or suppliments were harmles and could only do me good.

one was Echinacea:

(echinacea purpurea - echinacea augustifolia) is popular as an immune stimulant to boost the immune system and help ward off many winter ailments. One of the most popular natural products, Echinacea is a wonderful herb with many fans all over theworld.

I took it for a couple of months as a few people had said that they had benefited from it - I became extremely ill.

I tried other things such as St James Wort - this was another disaster which really made me depressed - the total opposite to what it was for!

You can suffer from an overdose with some vitamins or mixtures. This is why I would discuss it with my GP before taking any vitamins or suppliments.

I know that I am very lucky (as many aren't) that I am able to discuss openly with my GP any medication or treatments that could help me.

DanE2010

Im really sad that this positive thread has turned abit negative here! In particular Prettypeach seems to be getting a hard time! Now let me just back her up on something here - Just because you have a very understanding doctor does not in anyway mean that all GP's are the same and il think you'll find most ME sufferers get very little help from their GP's because the majority do not know how to treat it or even believe it is really an illness!

Now with my doctor, and with the majority of GP's in my area (through speaking with friends and work colleagues) they are quite happy to fobb you off, you have to keep going back until they finally do something! They dont just give you a blood test for this or that because you have asked for it, not at all! oh if I was that lucky to have a GP who actually wanted to do his job! After 3 years of going to my doctor with my symptoms and getting no help (apart from anti depressants and CBT - now theres a surprise!) , routine blood test's done, unrine sample, blood pressure checked etc, all the rountine stuff, it took my occupational health doctor at work to suggest I was displaying symptoms of ME, went to my doctor and demanding to be referred to someone, turns out there was an ME specialist in my PCT! Didnt think to referr me before! and the first visit to the specialist he took one look at my medical notes and diagnosed me with ME.

So I think you'll find most GP's arent as helpful to investigate your symptoms and for all the posters above who have said you can get this and that done just by asking your GP you are definately in the minority and extremely lucky! Sunnyone in particular are you talking inregards to ME? Because il think you find the NHS dont do any test's for ME regardless of a clinical need, il find you'll find most GP's have there own opinions on how it should be treated and the NICE guidelines for treating it doesnt involve anything in the way of tests etc, has your son got ME? Pease dont generalise because you'll find what one ME patient recieves on the NHS can be different to the ME patient in the next town. ME patients get very little help at all and that is a known fact and we tend to get quite insulted/touchy when its assumed there is plenty of help/support for us on the NHS when it is very clear we dont!

Mojisola

DanE2010 wrote: »

ME patients get very little help at all and that is a known fact and we tend to get quite insulted/touchy when its assumed there is plenty of help/support for us on the NHS when it is very clear we dont!

I agree with all Dan's post!

Anyone with ME who has a really good GP is very, very lucky. It's a minority experience.

I'll just add that people with ME often get told, "I know someone who had ME/I've read a magazine article about ME/I saw something on the TV about ME. Those people got better by doing x, y or z". If you don't rush out and try the same thing, or try it but don't get better, then you obviously aren't really ill and like being the way you are. It's not surprising people with ME sometimes over-react when told the next thing they should be trying!

Trialia

*nod* It's a very similar experience with fibromyalgia, Mojisola. I've been lucky this time - I finally have a decent GP who will listen - but she doesn't know much about it, unfortunately.