Apologies I know this won't mean much to everyone on this forum, but I know many of you have ME or CFS as well as Fibromyalgia and as such you may be interested in this.
Please see this "call to arms" from MEAction and follow the links. You can use MEAction as your organisation or the names of any ME organisations or forums that you are members of.
Please try this as it is very important and will have huge implications for the way the medical profession view this condition and therefore the treatment we are given.
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ukmsmi4
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Thanks for the link my friend. I have received an email from MEAction with this link and information as I have regular emails form them. I want to sincerely wish you all the best of luck.
No problem I fully understand. I was struggling all day with it yesterday.
I'm happy to walk you through the process if you want to pm me. Or just ask individual questions on here about the things you are stuck with and I'll happily try and help.
Don't worry though, I do know how much these seemingly simple tasks can take out of us.
OK, if you do manage to find the wherewithal to give it a go then the first bits of advice I would give you are
Firstly read through the MEAction instructions.
Secondly, if you aren't up to putting together a full comment can you please just comment something simple like 'I agree with this proposal'. Unfortunately it seems some of the submissions where people simply select the 'agree' box are disappearing unless you put something in the comment box as well.
And thirdly if you do want to say a bit more than that I would recommend you draft out your comment first in Word before starting the process so you can simply copy and paste it in when you get to that section. Or if you don't have access to word just write it down and type it directly from there. Not so easy if you are doing it from a device without a keyboard though. I did it from my pc.
I saved my comment in Word and I'm happy to share it with you if you want some idea of the sorts of things people have been saying. And yes, I did copy and paste quite a large chunck of it from the MEAction instructions, particularly for the technical part of the comments.
Don't overtax yourself if it's too complicated for how you are feeling though. I don't want to be responsible for you or anyone having a relapse. xx
Myalgic Encephalomyelitis (M.E.) is a debilitating acquired neurological disease which has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disorder with the code G.93.3. M.E. can occur in both epidemic and sporadic forms, over 60 outbreaks of M.E. have been recorded worldwide since 1934. M.E. is similar in a number of significant ways to multiple sclerosis, Lupus and poliomyelitis (polio). M.E. can be extremely severe and disabling and in some cases the disease is fatal.
The Hummingbird Foundation site that I gave the link to before also have a really good list of the major categories of symptoms though there are ones available on the web that break it down even further. I think the longest one I've seen has over 100. Any way the Humming Bird one is hfme.org/mesymptoms.htm
There is also a useful list on the ME Association site where they talk about the International Concensus Criteria diagnostic criteria. That gives an idea of the necessary symptoms for a diagnosis. The key bit on this one is to scroll down to Table 1. meassociation.org.uk/2011/0...
Sorry I know that's a lot of info but it's a complex condition.xx
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Can anyone please help..I'm at the end of my tether
Looking for a community of people with ME/CFS
To those of you who are suffering with Fibromyalgia ! When the medication stops working....
Do people on here have hypothyroidism or CFS?
