NEW! - UK DEPT. OF HEALTH to BAN ALL ME/CFS BLOOD DONATIONS from NOV 2010 (from MEA)!

pictureofhealth

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Thanks for the Facebook link TwoPenneth.

We also have a copy of the text on the site here too.

What Dr Shepherd has just emailed is a copy of the actual letter complete with DoH letterhead and everything - not just a copy of the text - for anyone who might find it useful to help with their own countries' blood banks etc , but I can't get the Attachment onto the website.
 

Bob

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Dept. of Health (UK) letter to Dr Shepherd (MEA) - Blood Donations and CFS/ME Patients

I have attached a copy of the Dept of Health letter, as requested by pictureofhealth.

Hi Cort or any Moderators,

Dr Shepherd has kindly forwarded a copy of the original letter sent to him & the ME Association by the UK's DoH - outlining the NEW regulations to ban blood donations from all UK ME/CFS patients, past and present, from November 2010.

He suggested we repost here as it may be of help to US advocacy organisations for introducing a similiar legislation in America (eg if we resend to CFIDS also).

However, not being technically literate, I can't unfortunately get the attachment to repost here. Could someone PM me with a private email address and I can forward it on to you please?

Hopefully the DoH here in the UK will issue their own Press Release or Statement about this once it comes into effect here in November this year.
 

Attachments

Bob

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This is a very interesting development...
Unfortunately the news has got buried because of the publication of the FDA/NIH paper... So I hope our American friends find this news.
I agree with Marco, who asked how this can possibly be to do with a relapsing/remitting disease, as the disease has been doing exactly that for 50 years, and there's never been this 'compassionate' attitude towards us before, for the sake of our health: "...to protect the donor's health from any possible harmful effects from donating blood"...
It does seem like rather a coincidence that they are so very compassionately concerned with our health at just the same moment that there happens to be a retrovirus contaminating the blood bank!
Quite a coincidence indeed!

And I love these quotes:

ME has been a relapsing illness for at least 50? years. Why the sudden rush to 'bring it into line'.
Wow, how strange that a false illness belief can be passed in the blood!
...as if UK was leading the way on things related to CFS/ME hahaha at the stupidity of it.
I'm sorry did I fall into a parallel universe?(big grins)
Great Stuff everyone! and great humour! :D
 
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Hi everyone,

this is my first post/reply to thread. Sorry that my first post will consist mainly of venting, ranting and raving but I have been a seething mess for years ... I know it doesn't help but from what I see here I'm apparently not the only one. I live in the Bristol area and the only "treatment" I've been given since I was diagnosed in 2004 is the CBT programme through Frenchay hospital. Since then I been neglected and just left to rot. Ok so the CBT was done by a ME/CFS "specialist" team and I did find the advice on pacing extremely valuable in helping me manage. However I attended group meetings (exhausting) and we were told that if we were disciplined enough and followed all the advice received during the 12 week programme we could in time recover. I had high hopes at the beginning and naively believed them ... perhaps I desperately wanted to believe them ... but it didn't take me long to realize that despite all my discipline it was still the things I could not control (virus, infections, bereavement, unforseen surgery etc) that would put me into a relapse pronto. When I'd phone the team at the clinic I was furious at their suggestion that it must somehow be my own fault if I'd relapsed as I must not have been following their advice and there wasn't anything further they could help me with despite at the beginning being told that they were available for ongoing long term support. I feel I/we were lied to ... and as a result am now totally PISSED OFF.

Sorry for the shouting and swearing - it was for the so called "professionals" not fellow cfs sufferers. Anyway - this business about the blood banks just has me fuming ... I feel someone's not being honest with us. Yeah I feel pretty much like a raving lunatic at the moment but sadly and ironically that's what the system has reduced me to (as opposed to mental illness being the cause of CFS) btw I was actually told by a very arrogant medic that CFS is not an illness but a syndrome - (the implication being that it's ... ? Can anyone help me with that one?) and tends to affect those with underlying personality disorder/issues. Anyhow I promptly pointed out that AIDS is also a "syndrome"

Oops am I a little cranky? Well excuuuuuse me. (one of my favourite American sayings).

Sorry for venting everyone.

Peace to all.
 
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Welcome misscrankpants, I am not far away from you in the west country and agree with everything you say and share your frustration, but am not sure about the need to shout and swear at us - we are all on your side. hugs
 
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Hi there,

Thanks for the welcome. I wasn't shouting or swearing at any member of/on this forum - it was exclusively reserved for those doing all the lying. Or at least lying is what appears to be happening. I just don't have the energy to be patient (pun?:Retro smile:) these days. It wasn't my intention to offend anyone.

Peace.
 

VillageLife

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there just aren't enough strong words to explain how the UK have treated the CFS population.

The thing they have got totally wrong is telling us that you can actually get well if you want, they have no right to say that, it gives out false hope.
 

Adam

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Very interesting.

If there was previously NO "lifetime ban" on ME/CFS patients giving blood, that means it didn't even count as a "chronic condition of unknown aetiology" (that's etiology in US English)?? Why ever not?

Ah, because they *knew* its etiology in the UK. "Psychosocial." That would be no hindrance to giving blood as long as you "felt" ok. Right?

Perhaps it is now "considered sensible to avoid donations from people with" ME/CFS because there may be "something in the blood" after all??
Maybe they have decided there is a risk of passing on false illness beliefs in the blood?

:D:D:D:D
 

pictureofhealth

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Thanks Moderators for combining these 2 threads & updates.

I have deleted my previous post here in connection with this & the 27 Aug update - thank you!
 

Athene

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If someone gave blood saying "No I don't have CFS" and then, after it had been pumped into someone else, said "Ho ho, actually I do have CFS", what exactly would be the punishment?

Because, since CFS is all in our minds, we only have it if we SAY we have it. If say we haven't got it, and claim we feel great, then we haven't got it, right?
How would they "prove" we were guilty?
 

Wonko

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in that situation, in the UK at least, proof of guilt is not required - if you say you havent got ME then your mad, if you say you have then your mad - either way if they decide to your commited under mental health - not being aware you were commitign a crime is no longer a defence under UK law
 
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If someone gave blood saying "No I don't have CFS" and then, after it had been pumped into someone else, said "Ho ho, actually I do have CFS", what exactly would be the punishment?

Because, since CFS is all in our minds, we only have it if we SAY we have it. If say we haven't got it, and claim we feel great, then we haven't got it, right?
How would they "prove" we were guilty?
-----------------------------------------------

Athene, I love it! That's brilliant!!! :)
 

Otis

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Hi there,

Thanks for the welcome. I wasn't shouting or swearing at any member of/on this forum - it was exclusively reserved for those doing all the lying. Or at least lying is what appears to be happening. I just don't have the energy to be patient (pun?:Retro smile:) these days. It wasn't my intention to offend anyone.

Peace.
Welcome to the forums. I am sorry to hear all the troubles you've had. Rants are welcome and healthy, however the large bold all caps letters are a form of 'shouting' and is especially troubling for folks who are visually sensitive, as am I at the moment and when combined with the swearing is a bit much. I've removed those bits - I hope it felt good to get it off your chest.
 

Bob

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Hi everyone,

this is my first post/reply to thread. Sorry that my first post will consist mainly of venting, ranting and raving but I have been a seething mess for years ... I know it doesn't help but from what I see here I'm apparently not the only one. I live in the Bristol area and the only "treatment" I've been given since I was diagnosed in 2004 is the CBT programme through Frenchay hospital. Since then I been neglected and just left to rot. Ok so the CBT was done by a ME/CFS "specialist" team and I did find the advice on pacing extremely valuable in helping me manage. However I attended group meetings (exhausting) and we were told that if we were disciplined enough and followed all the advice received during the 12 week programme we could in time recover. I had high hopes at the beginning and naively believed them ... perhaps I desperately wanted to believe them ... but it didn't take me long to realize that despite all my discipline it was still the things I could not control (virus, infections, bereavement, unforseen surgery etc) that would put me into a relapse pronto. When I'd phone the team at the clinic I was furious at their suggestion that it must somehow be my own fault if I'd relapsed as I must not have been following their advice and there wasn't anything further they could help me with despite at the beginning being told that they were available for ongoing long term support. I feel I/we were lied to ... and as a result am now totally PISSED OFF.

Sorry for the shouting and swearing - it was for the so called "professionals" not fellow cfs sufferers. Anyway - this business about the blood banks just has me fuming ... I feel someone's not being honest with us. Yeah I feel pretty much like a raving lunatic at the moment but sadly and ironically that's what the system has reduced me to (as opposed to mental illness being the cause of CFS) btw I was actually told by a very arrogant medic that CFS is not an illness but a syndrome - (the implication being that it's ... ? Can anyone help me with that one?) and tends to affect those with underlying personality disorder/issues. Anyhow I promptly pointed out that AIDS is also a "syndrome"

Oops am I a little cranky? Well excuuuuuse me. (one of my favourite American sayings).

Sorry for venting everyone.

Peace to all.
Hi misscrankypants...
A big welcome to the forum...
I totally understand your need to vent your frustrations, and to have a grumble...
Believe me, I've done more grumbling, venting and even crying since I've had this illness than I'd ever done in my life before... I think severe 'frustration' is the word I'd use...

I totally identify with your situation, and have had almost identical experiences as you with the neglect of the UK health services...
The only differences are that I never got any treatment, medical input or referal for the first five years, and was referred to a CBT course only after I'd been ill for 5 years. Luckily, by this time, I knew all about my illness and so I knew they were talking rubbish straight away, and so I only went to 2 sessions.
Also, my doctor never said anything negative about my ME because he just never said anything. Period. He just used to look at his computer and write stuff while I spoke. Goodness knows what my records say! But at least he accepted my self-diagnosis of ME without a negative vocal response anyway... I think he may have blinked once or twice while I was talking to him.

Best wishes to you misscrankypants... hope you enjoy the forum...
Feel free to send me a private message if you'd like to chat further.
Bob
 

thegodofpleasure

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there just aren't enough strong words to explain how the UK have treated the CFS population.

The thing they have got totally wrong is telling us that you can actually get well if you want, they have no right to say that, it gives out false hope.
Not just false hope (in the case of those who don't yet know better) but equally importantly, it gives the same false belief to a wider (judgemental ?) audience.
 

thegodofpleasure

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NHS Blood and Transplant website FAQ

I had a look at the NHS Blood & Transplant website - in search of similar "relapsing conditions" which negate people from donating blood. I couldn't find any !

However, I did come across a FAQ pertaining to the imposition of a lifetime ban of Men who have sex with Men, as of July 2010.

http://www.nhsbt.nhs.uk/current_issues/mhsm100408_faq.html

If, when you read this FAQ, you substitute "ME/CFS patients" for the words Men who have sex with Men, then you perhaps have a more honest explanation of the proposed UK ban on ME/CFS sufferers fom donating blood.

TGOP :worried: