A short sad history of ME/CFS

DanE2010

clouty wrote: »

Highly recommended. Hey, the thread's been running on while I was away. Cool. DanE2010 you are lovely :T

:j Thank you!

Hope everyone is doing ok, ive had a bad week unfortunately, spending most of the day asleep and then wide awake at night, all gone abit Pete Tong since I got a cold 2 weeks ago - and I had been doing so well! Hopefully some sort of energy will appear soon!

Lou_C

Welshwoofs wrote: »

Sarah Myhill was the doctor who I was under for treatment. I was absolutely astounded and dismayed when she was struck off for what appears to be a witch hunt by people who refuse to think 'outside the box'.

Myhill looked at my problem holistically instead of throwing endless drugs at me to patch symptoms or writing the entire thing off to depression. She was the one who did the bloods which exposed my low Magnesium levels and my poor ability to retain it.

Today my life is massively better. I'm back at the career level I was (higher, in fact), yet with a far better lifestyle and work/life balance. I feel healthy and my knowledge of my limits is such that I can almost always avoid reoccurances of the ME. There is no doubt in my mind that I have Sarah Myhill to thank for that.

Hi could I ask how long you continued with the magnesium and b12 before you saw a marked improvement. I saw Dr Myhill several years ago and was on a similar treatment plan, I found it did help, but not enough to get me back to work, and unfortunately due to lack of funds was unable to continue with it.

maytaurus

DanE2010 wrote: »

Hope everyone is doing ok, ive had a bad week unfortunately, spending most of the day asleep and then wide awake at night, all gone abit Pete Tong since I got a cold 2 weeks ago - and I had been doing so well! Hopefully some sort of energy will appear soon!

I've been exactly the same .... hence me posting at 5.19 am :rotfl:

Of course you know it's all in our minds :mad: ............ that's why

Patients with ME will no longer be able to donate blood in the UK under new safety guidelines

http://www.bbc.co.uk/news/health-11465723

NEH

maytaurus wrote: »

I've been exactly the same .... hence me posting at 5.19 am :rotfl:

Of course you know it's all in our minds :mad: ............ that's why

Patients with ME will no longer be able to donate blood in the UK under new safety guidelines

http://www.bbc.co.uk/news/health-11465723

Interesting article...

But to most people who have had ME or Fibromyalgia it's common sense not to donate blood.

They also when i was diagnosed with ME many moons ago they told me it was simliar to glandular fever and therefore it could be infectious in the initial stages which is why i have never given blood....

DanE2010

maytaurus wrote: »

I've been exactly the same .... hence me posting at 5.19 am :rotfl:

Of course you know it's all in our minds :mad: ............ that's why

Patients with ME will no longer be able to donate blood in the UK under new safety guidelines

http://www.bbc.co.uk/news/health-11465723

Its infuriating isnt it?! Im even more convinced now the UK is trying to cover up the seriousness of this, there is more to the M.E story that the UK goverment and health department seem intent on keeping secret, but thanks to research by places like wpi it is getting harder for them to hide the truth.

Sorry im having one of those days! Exhausted and on days like this I get really angry about the way ive been treated in regards to my illness, hopefully we will get the help we so desperately need soon!

mardatha

Is interesting though. Like to see how they will keep up the pretence that its all in the mind.. they will say "oh its just a precaution"..but then there must be a reason or there would be no need .

DanE2010

You may find this interesting too.................. the UK know more than what they are letting on

http://www.meactionuk.org.uk/Further_Articles.htm

7roland8

Just coming in on the end of this thread - the National Archives say you can request the reason why the files are closed - has anyone done that? Could it just be that personal detail hare held in them? I've not gone into it in detail.

Liekwise feeling very weak and achy these days - not been out for a yr and can't make family funeral next week - comes to something!

dontknow1

Thank you for a very interesting thread and I(sorry forget the word) but i understand / feel for what some of you have gone are going through.
I have been unwell on and off for the past few years , with differing symptoms.
we had been thinking that each sympton was its own issue ie back pain was just a bad back...
After a recent episode and discussing family history i was referred to a neurologist in regards NF1 or 2 and MS..( both already exist within close family).
All my symptons do not point to NF but the neurologist believes i have it ( referred now to a geanologist) the neurologist believed it might be ms....but the mri's show no schlerosis.

Some ms sufferers 5% have been known not to show schlerosis the first few times on mri's...so stuck with just a two line letter from the neurologist saying no signs on schlerosis but you have high levels of anti cardiolippins...your gp will do a blood test in 8 weeks...( 8 weeks been and gone..no blood test)
Anyway sorry to drag on...I suffer from blinding headaches, memory loss, chronic fatigue..somedays not getting up others i manage it to a chair and doze, dizzyness, cramps in hands and chest,
Had severe back pain....vanished on its own...urinary incontinence (now vanished) weakness in legs and arms. Constant muscle pain.

I don't think I have ME , the doctor has never mentioned it, he has discussed parkinsons, MS, NF, Diabetes .( which it isnt)..

The only thing that drew me to the thread was the glandular fever, a few years back 3 or 4 actually i had been unwell for about 12 weeks..i put it down to the fact i had given up smoking, but after 12 weeks i thought something was wrong and went to the gp who diagnosed glandular fever but didnt treat it because it was nearly over....
I see there has been some discussions re me and glandular fever and wondered if anyone knows if this is true or not,or had any experience of this ?

(ADDED to clarify) By this i mean i have read that there has been some investigation into ME being triggered in some people after they have had Glandular fever or an associated virus.
thanks

dontknow1

jakes-mum wrote: »

My sister was diagnosed with M.E 18 years ago after having Glandular Fever,

re my above post