ME/CFS LINKS & INFO (NICE Guideline Judicial Review High Court11/12th Feb 2009)

maytaurus · 7 April 2009 at 9:33PM

Here are some links which I have found interesting/useful
I’m sure you will have seen at least some of them before

http://www.sleepydust.net/

You can watch a free video made for the friends and family of ME/CFS sufferers [i.e. sufferers of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome / Post Viral Fatigue Syndrome.]here;

http://www.sleepydust.net/me-cfs-chronic-fatigue-syndrome-video.html

http://www.foggyfriends.org/

http://www.patient.co.uk/DisplayConc...&MaxResults=50

http://fmcfsme.com/newly_diagnosed.php#cfs

http://www.mesupport.org/aboutme.html

http://niceguidelines.blogspot.com/2...me-enigma.html

http://www.fmcfsme.com/

http://fmcfsme.com/newly_diagnosed.php#tips

Take Our FM/CFS/ME Survey

http://www.meresearch.org.uk/information/whatisme.html

http://www.nmec.org.uk/

http://www.mesupport.co.uk/

http://www.afme.org.uk/allaboutme.asp

http://www.meassociation.org.uk/content/blogcategory/38/83/

http://www.afme.org.uk/

http://www.supportme.co.uk/index2.htm

http://www.ei-resource.org/illness-information/environmental-illnesses/chronic-fatigue-syndrome-cfs-myalgic-encephalopathy-me/

http://www.ableize.com/specific-disabilities/chronic-fatigue-syndrome/ME-Myalgic-Encephalopathy/

http://www.investinme.org/InfoCentrehome.htm

http://meagenda.wordpress.com/about/

starchild1972 · 8 April 2009 at 8:49PM

Hubby has seen Professor Tony Pinching and although he's not making any promises about his M.E. recovery, he has given him some hope. He told him that his leg problem is defintely not in the head, but it is in the brain. When someone develops M.E., 99% of the time pain is felt in an old injury, usually the last relatively serious injury (In his case, where he got rammed by a pig). Sometimes the neural pathways become blocked and confused.
He went on to say that he was lucky that it wasn't his old neck injury that got confused, otherwise he would have been paralysed. It put on a level with phantom limb syndrome. Where an amputee can feel the limb but it is not there.
Definately not psychological, definately neurological.
It has been so long now that he can't promise that he will ever get back to walking normally, but even if he could walk around the house with out crutches and as far as the car would be a bonus.
All that coupled with an infection (nasal) and then changing jobs from a basically dirty job (handling pigs on a farm) to a super sterile one (cheese production) set everything off. It was just lying in wait and could have happened at any time.

He also gave a warning about "new age/holistic" treatments.

If it really worked, he would have the practitioners in his clinics! The placebo effect is great but if you are paying more than £20 for a 2 hr session then you are dealing with quacks, false promises and those that prey on the vulnerable.

Saying that, he is fine about herbal medicine, acupuncture, vitamin courses, hypnotherapy, massage, reiki (for relaxation) and aromatherapy (from fully qualified practioners).
Just some more of the "therapies" and "processes" ( Mikel therapy, Lightening Process etc) he is worried about. Especially when you have to do intensive training for £200-£500 and then are expected to be a practioner yourself after a weekend course and get more people involved.

He also explained what CBT should be in regards to treatment. It's not about "all in your head" it's about getting you to accept what your limitations are and to boost esteem and confidence.
Graded Exercise Therapy should never be suggested until the patient is physically and psychologically ready and wants to undertake it.
Anyone who suggests anything different is not understanding how the treatments should be done.

vikki_louise · 9 April 2009 at 1:03PM

Calling everyone who has, or has had severe ME.
Hello, my name is Vikki, I've had ME for a long time now and had severe ME since 2001. I spent 5 years unable to sit up or walk. I'm still in bed 95% of the time but can go out around once a month in my chair, and take about 10 unaided steps.
The reason I'm posting is I've been asked to give a talk to a local OAP group, its towards the end of the year but I want to prepare early!
I'm being asked to talk for quite a long time so I was trying to think of ways to fill up the time to make it last tiring.
I came up with the idea of a slideshow (set to music), with pictures of people who are/were bedbound with their name and how long they have spent in bed. I'm hoping this way it will give a "face" to severe ME rather than just words.
For that I need some help though. If you would like to help please email me a picture of you to [EMAIL="viks@postpals.co.uk"]viks@postpals.co.uk[/EMAIL] with your first name, and how long you were bedbound for, if you are still bedbound then put a + at the end.
I plan to use this slide show for the talk, but also to use on places like Youtube and Facebook to raise more awareness.
Thank you,
Viks

daska · 9 April 2009 at 1:56PM

I'm not wishing to put you off but having had to sit through numerous presentations where people were obviously 'padding' could I urge you to talk to the organisers and explain that, in order to fill the time without adversely affecting your condition, you will need to pad out your talk. If their aim is to promote understanding then they should be able to, and aggreeable to, presenting your reduced length talk, or allowing you to take a break in the middle, in such a way that no-one thinks the less of you. Definitely avoid presenting more than a few piccies in succession except right at the beginning.

I remember seeing an informational film once on one of the websites (sleepydust?) - how about seeing if you can make use of something like this to help as well.

My major problems are confusion, muscle weakness, pain and twitches/tremors and I give thanks on a regular basis that I have never ended up bed-bound - though I do have to spend most of the day seated. My heart goes out to those who suffer the fatiguing aspects to this illness worse than I do.

CJ · 12 April 2009 at 8:50PM

HI Viks
I notice that the talk you are giving is to OAPs and I don't know if anyone else feels like this but have you considered that the health of some of these people may not be at it's best either, as unless you are really lucky, it kind of comes with age.
The last thing I would really want to watch is a photographic list of bedridden people, I would find it upsetting and downright despressing at any age.
I am surprised actually that the organisers thought our illness was suitable for a group of OAPS, I think Help The Aged would have something to say on the matter!! Sorry I am not meaning to be flippant but the thought of sitting through a lecture in my 60s, 70s, or 80,s about a group of chronically sick people seems horrifying to me. It's sort of like the rollcall of people the AIDs charities used at the beginning of that crisis, People do need to be informed about the illness but in a positive and if possible upbeat way.
I will no doubt have upset a few people with this but in general people think we are a lot of whinging slackers at the best of times

vikki_louise · 19 April 2009 at 10:44PM

CJ wrote: »

HI Viks
I notice that the talk you are giving is to OAPs and I don't know if anyone else feels like this but have you considered that the health of some of these people may not be at it's best either, as unless you are really lucky, it kind of comes with age.
The last thing I would really want to watch is a photographic list of bedridden people, I would find it upsetting and downright despressing at any age.
I am surprised actually that the organisers thought our illness was suitable for a group of OAPS, I think Help The Aged would have something to say on the matter!! Sorry I am not meaning to be flippant but the thought of sitting through a lecture in my 60s, 70s, or 80,s about a group of chronically sick people seems horrifying to me. It's sort of like the rollcall of people the AIDs charities used at the beginning of that crisis, People do need to be informed about the illness but in a positive and if possible upbeat way.
I will no doubt have upset a few people with this but in general people think we are a lot of whinging slackers at the best of times

Hello, Ive got to inject some cheer into it as its not just about ME, but about how my experiences of severe ME lead to me helping very sick kids. I run www.postpals.co.uk from bed, and we are their charity of the year, and will put a lot of focus on the positives, but got to think of the best way of doing it. We have a video which i will show which is this one http://www.youtube.com/watch?v=l42sKtdPXrw

Millburn_farm · 19 April 2009 at 11:11PM

Viks; just use your signature, that silver lining

yours is post pals, it helps kids and you originally wanted to be a DR; your charity helps kids feel better

isn't that really what Dr's want to do

you know my silver lining; didn't want a family, and here I am farmer's wife, he's 5 kids, I helped (fulltime) bring up 2 of them and now I'm helping his eldest son (20) be a step-dad to 2 wee boys; not the life I planned but oH

I can supply such happy pictures, not unusal, but the smiles are in part from ME and my ME, and my being here at home will continue that

trail

it makes my life

& real

edited; if and however; because the eldest boy knows that we are now a part of "his" two wee boys lives; we will be here to help two wee boys who don't have their "real" Dad's and those families; me being here at home means that whatever; a 4yr old and 2 yr old will be able to have that other family who remember 1st steps, 1st tractor steering, 1st

whatever; but me being here at home helps that; and we hope that helps two wee boys become two men, where/whatever their paternal side trails

maytaurus · 1 May 2009 at 4:37AM

FREE monthly Newsletter offers you accurate and up-to-date information about FM and CFS/ME

http://fmcfsme.com/newsletter_subscription.php

CJ · 7 May 2009 at 8:22PM

Was just talking to Neil Abbot a meresearch.org.uk and noticed a new fundraising link at the end of the email www.justfourquid.com.
The reason I was picking Neils superior brain was I am having eye problems and the optician is sending me to the opthalmologist because he doesn't understand why.
Anyone else have problems with their eyes and if so in what way?

Millburn_farm · 8 May 2009 at 7:46AM

If (sorry not if, when) I'm tired I can't focus properly, or I have to focus with purpose, rather than automatically

I use http://www.everyclick.com/ as my search engine, you join up, and decide which charity to help, and they get money for you doing your searches on it

So far £3,358.84 has been raised for ME Research UK

ME/CFS LINKS & INFO (NICE Guideline Judicial Review High Court11/12th Feb 2009)

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ME/CFS LINKS & INFO (*NICE Guideline Judicial Review High Court11/12th Feb 2009*)

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ME/CFS LINKS & INFO (NICE Guideline Judicial Review High Court11/12th Feb 2009)