ME is still not taken seriously

In spite of the overwhelming evidence, the UK NHS still refuses to accept ME as a genuine illness and vehemently will never accept it as such. They will even go as far as torturing children to make their point and warn us no to do the same.

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• ME
• Myalgic
• encephalomyelitis
• chronic
• fatigue
• syndrome
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• hoofbags

[xmrvpositivedotcom]

Dear Hoofbags. Thanks once again for this excellent video, you do a great service to us patients. The prevention of visitors is done in the NHS still in practice, the National ME centre tried to ban me from visitors for 2 weeks so they could drug me. I refused as I was an adult and not sectioned. You can see how easy it is for child abuse to take place in the NHS, under the cloak of the religion of psychiatry ordering abuse. Poor guy I really feel for him, I wish I could meet him.

[hoofbags]

@xmrvpositivedotcom We must remember that psychiatrists are the NHS bottom feeders. They were the originators of the "all in the mind" ME/CFS theory but they are a strong lobbying force cleaver enough to manipulate government ministers to their evil ends. Because they earn £ thousands per week they resent taxes used to support sick people.

[vikkkilouise]

Thank you for posting this, I have had ME since being a child, at my worst I couldnt do anything and no amount of ghost trains or swimmings pools would of solved this, I couldn't cope with someone talkingo the slightest bit of light, and i can't begin to imagine what ean went through.I've also been treated badly by some of the medical proffesion but nothing remotely on that scale, my heart goes out to hi, and everyone else who has been through similiar things

[hoofbags]

Hello V L. I have had no experiences like this either. I get negative comments from non-medics and that does as much damage as anything else: primarily self-esteem. The main problem with treating this illness is, in my opinion, that the welfare/DWP is over-burdened and its simply cheaper to discredit us than to give address to the issue of support and care. I hope you get better and manage to live within the constraints of ME. The state could do a lot more but won't. Thank you for your comment.

[deadgirldreaming]

Thank you so much for making this available.

I am so glad to see that Ean Proctor is managing Ok after everything he was out through - it has made me cry.

It is absolutely shameful the way people have been and are being treated.

I look forward to looking at what else you have managed to archive.

Do you have the Panorama programme or I Remember ME?

Oh - and what was this taken from - who is the woman speaking?

[hoofbags]

Hello deadgirl. I agree, it's very saddening but important to be viewed. The lady who features here is Dr. Anne Macintire. She has ME and she was once the medical advisor for the Action for ME. She is now part of the ME association and has done so much to raise awareness of this illness. I still have loads of stuff to go but have recently moved: all of my video processing equipment is in boxes unpacked. I also have VHS stuff on amalgam fillings in teeth: attributing to ME. Gonna upload it soon!

[thecrystalkid]

scrapes jaw off the floor...shame on them...sounds like something out of victorian england. autism was blamed on mothers, m.s. was first thought to be psychological...our day will come...in the m.e.antime we suffer...

totally agree that a dr. saying its pschological = i haven't a clue and don't have the nads to admit it...

[octrosie20]

I'm so glad these testimonies are on record - we want the ignorance of these doctors made available to show just what terrible treatment we have had to suffer over the decades.

[IndigoJo]

(continued) It definitely wasn't Lynn Gilderdale; this girl was younger and could speak. But I'm pretty sure it was from the same period.

[IndigoJo]

Do you have any of the intermediate parts of this programme? It must have lasted an hour or so as that was the age of proper documentaries (not like the Panorama of today).

I'm not sure if it was this programme or another, but I also remember seeing a young girl who had much the same treatment as Ean Proctor when he was paralysed from ME. She was locked in a ward at Great Ormond St in London. Perhaps it was a prog about ME or an expose of stuff going on at GOSH, not sure.

[hoofbags]

Hello again Luminescent feeling. I hope you watched the recent Panorama about K guiderdale. Lynn did so much for us ME peeps and seems to still be even after her passing. K was cleared and I'm so glad about this. The programme must have stimulated more discussion about our illness. My friend in London holds a camera in movie mode in front of her telly and it does the trick: not brilliant picture quality but it gets the message accross. I must put the programme on here. Great comment, thanks. Liz

[luminescentfeeling]

This ABUSE , is not unheard of in the halls of the UK NHS's premier adult hospital: The National Hospital for Neurology and Neurosurgery in London.

One treatment there is to deny food after a given number of days and make the ME patients walk to a room to have a 'group' meal. If you walk, it is evidence you are neurotic and attention seeking (the theory). This form of 'therapy' is commonly given to children with ME also.

Locked doors mean anything can happen. Wessely we are ALL watching XMRV.

[hoofbags]

You need to identify yourself. At a guess, you're Debbie/Alan or Daren/Kelly. What confuses me is that D/A have good literary skills and Internet access, although lack of literacy infers D/K but D/K cant afford Internet because of having to buy skunk weed and Betty Boo. If you want a slagging match, Im up for it but I need to know what of my ammunition is appropriate for each party. Dont be a coward. B-)