M.E. on UK television

Myalgic Encephalomyelitis featured on UK television.

Features a young severelly ill sufferer, Suzy Tayler.

Category:

Education

Tags:

• ME
• myalgic
• encephalomyelitis
• CFS
• chronic
• fatigue
• syndrome
• CFIDS
• illness
• disease

[Bluebottle83]

I wonder how she is now?

I've had severe ME for 21 years: in all that time there has been no UK taxpayers money spent on biomedical research. All funding has been given to psychiatrists who, outrageously, accuse ME sufferers of choosing to be ill.

We desperately need biomedical treatment based on biomedical research. All we are given is useless psychobabble.

M.E. has been classified as a physical, neurological illness by the WHO since 1969.

[HearAndLove]

You'll be glad to know that money is at last being put into the biomedical area of researching ME. The MRC Medical Research Council are now funding different projects. It takes time and we need a tissue bank for ME patients to donate living tissue and more importantly brain and spinal cord after death. There should be news of this shortly from the MEA and AFME.

In the meantime psychological approaches and gradual activity programs will continue to be given on the NHS.

It's scandalous!

[thecrystalkid]

@Bluebottle83 small problem of pharmaceutical drugs being toxic forming and imo one of the possible causes of m.e.. drug trials are manipulated to give the desired results that may then be used to coerce people like myself who abhore everything biomedical, to take big pharma's latest money spinner. the right complimentary therapy for the individual is the best way forward for most i feel

[essy111]

I recommend a really good book to get by Janet Hurrell called THE JOURNEY THROUGH ME/CHRONIC FATIGUE SYNDROME, Its an A TO Z greatly packed with the best information and contacts on how to get over this nasty illness. I also recommend Licorice tea for the adrenal glands to boost up a bit more energy.

[Denomar]

And they still say this is a psychological condition. Sickening.

[kittycath1]

Thankyou for sharing this - I've been ill for 12 years and I really know that amazing feeling of getting a tiny bit better, I'm very slowly feeling a bit brighter but it's tiny really. I hope she is feeling much better now, the more coverage the better - we have to be believed!!

[freedomfromme]

Thank you very much for sharing this insightful video. We have many specialised ME videos on our channel please do take a look

[ixchelkali]

Thank you, Susie, for using some of your precious little energy to share your story. I hope your progress continues.

[HearAndLove]

I know, it makes me so angry. The tissue bank idea is good and the project leader wants it to be independent. However, if the funding can't be found from the right organisations, they might go in the wrong direction.

I do think the research WILL go down the biomedical route. You know what that means though...pharmaceuticals with all their side effects.

[Bluebottle83]

AfME have never funded biomedical research, having given all their funding to psychological research. They have given large sums to Peter White's PACE trial and to Esther Crawley, both who think M.E. is a somatisation disorder. If they fund a tissue bank, I suspect it will only be used by the psychiatrist lobby.

AfME do not have full members, those who join do not have voting rights and AGMs are not held.

They fully supported the NICE guidelines and called for more GET and CBT.

[FreeBritain1]

Can we please pray for the protection of the disabled and sick in the current process of change in the UK? We must place Christ in front of our most weak and frail. Christ is alive in these people. With their limited ability and strength, those who have been fighting are now worn out. Please pray. Thank you and God bless x