ME Awareness Day

[gingerbiscuitandacuppatea]

Today is ME Awareness Day. There is a brilliantly written guest post about M.E. www.mumsnet.com/Talk/guest_posts/2376412-Guest-post-M-E-Awareness-Week-No-Im-not-just-tired

I have had ME 23 years and I am frustrated by how little understanding there still is in this Neurological disease. Newspapers still often support the view that ME patients just need to try harder while it has been proven time and time again that this is a real, biological disease with many similarities to the widely known and understood MS.

Hi all,
The OP has asked if we can move this over to General Health, so we will be doing that shortly.

That's good. There's some valuable information being shared on here, for those of us still awaiting formal diagnosis, that it would have been a shame to lose after 90 days.

This is what I posted on my Facebook on Tuesday:

Today it is international awareness day for CFS/ME and Fibromyalgia. Perhaps the most important thing of which you need to be aware is that you can be saddled with any of these diagnoses, as I was, when you actually have thyroid or adrenal problems. Check your blood test results: Vitamin D replete? Vitamin B12 over 500? Folate high in range? Ferritin at least mid-range? TSH less than 2? FT4 and FT3 in the top 25% of the range? TPO and TgAB antibodies negative? Serum cortisol above 500? If you say ‘no’ to any of these, then you need further investigations. This has been a public service announcement.

Thesecretcervix thank you no I have not been testedp

Sorry pressed send accidentally. I will ask my neurologist at my next appointment xx

I had Lyme for many years before I developed ME, so I was used to being exhausted and getting ill if I did too much.

However with ME the strange thing, which was new to me and I suspect unique to ME, was that intellectual activity could make me physically exhausted, weak and in pain. Emotional activity or stress could make me intellectually incapacitated, unable to make even the simplest of decisions.

It seems that ANY activity or effort, no matter what kind, affects the whole person including physically, mentally and emotionally.

This is very challenging to manage, trying to keep ALL types of activity to a very low level in order to be able to function when it is necessary.

Lyme disease is on the list of things my GP wants to rule out before reaching a diagnosis of ME/CFS. I'm pretty sure I'd remember getting tick bites (have seen pictures of them) but perhaps they don't always look that dramatic.

I'm amazed there are so many conditions that seem to have cross over or similar symptoms that all have to be eliminated with various tests before ME is diagnosed. It is still considered the last resort - if it's none of these illnesses then it must be ME :(

I had ME for four years but am about okay now. Work full time, quite active otherwise. Do pick up a lot of colds etc but am really well.

I have ME/CFS

I also have Fibromyalgia & IBS

I also have low Vit D, low B12 & low Zinc; multiple contact allergies & food intolerances

I think I have an autoimmune syndrome of some sort.....but what do I know?

I am fascinated by the research into a leaky gut as I think this is massively relevant