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UTV: Northern Ireland: More sufferers plea for help (features Dr Enlander)

allyb

Senior Member
Messages
127
Location
yorkshire/lancashire border, England
Thanks firestormm, an inspirational start to my day,



:victory:Go Northern Ireland.........:victory:a little country with a big voice, shouting loudly, I do hope they are heard. When the health minister is not available, they shame him by his absence and seek out Dr Enlander to put things into perspective.

Shame they think the UK has more to offer, it really hasnt and a bigger Psychiatric influence, which leading by example will be partly responsible for why Ireland is so poorly served.


They have asked for facebook twitter responses, I hope they get a massive thank you from all corners of the globe. They could our lead.;)
allyb
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Thanks firestormm, an inspirational start to my day,



:victory:Go Northern Ireland.........:victory:a little country with a big voice, shouting loudly, I do hope they are heard. When the health minister is not available, they shame him by his absence and seek out Dr Enlander to put things into perspective.

Shame they think the UK has more to offer, it really hasnt and a bigger Psychiatric influence, which leading by example will be partly responsible for why Ireland is so poorly served.


They have asked for facebook twitter responses, I hope they get a massive thank you from all corners of the globe. They could our lead.;)
allyb

As an integral part of the UK allyb the NI authorities have no choice but to comply with the NICE guidelines.

I don't know what provision is like now but there was one hospital based doctor specialising in ME/CFS who has now closed the clinic and a 'Chronic Fatigue' clinic that merely screened for other exclusionary fatiguing illness (like cancer, diabetes, heart disease etc) and then discharged patients with a diagnosis of ME/CFS.
 

allyb

Senior Member
Messages
127
Location
yorkshire/lancashire border, England
As an integral part of the UK allyb the NI authorities have no choice but to comply with the NICE guidelines.

Yes Marco it is indeed very limited for ME/CFS

People who have influence........influence NICE and NICE have influence in the NOT so NICE way that some are treated.:rolleyes:

Kindest regards
allyb
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
[video=youtube;B_Ii9QUagV4]http://www.youtube.com/watch?v=B_Ii9QUagV4[/video]

I didn't think this one was particularly strong, but it's more exposure and that can't be bad can it? Dr Enlander is in Northern Ireland next month for a talk and meeting with Forward ME in the House of Lords on the 6th March I believe.

Will type it up later in case I missed something...
 

Nielk

Senior Member
Messages
6,970
[video]http://www.u.tv/utvplayer/everywhere/player.aspx?vidid=142609&chapid=116927&arti_id=e0e07bd3-c5e8-4f0c-811b-5756a3ccd4c0&clientid=100000[/video]

I posted this on a different thread.
 

Abha

Abha
Messages
267
Location
UK
Hi Nielk,
If one clicks on your link this comes up
404 - File or directory not found.
The resource you are looking for might have been removed, had its name changed, or is temporarily unavailable.
 

Nielk

Senior Member
Messages
6,970
Hi Nielk,
If one clicks on your link this comes up
404 - File or directory not found.
The resource you are looking for might have been removed, had its name changed, or is temporarily unavailable.

Thanks Abha. I just fixed it so hopefully it should work.
 

Daffodil

Senior Member
Messages
5,873
years ago, dr. enlander wrote the queen in hopes of getting help for suffering CFS patients. he is one of the royal family's doctors. i dont think the queen did anything.

SHAME. SHAME ON ALL OF THEM.
 

Nielk

Senior Member
Messages
6,970
years ago, dr. enlander wrote the queen in hopes of getting help for suffering CFS patients. he is one of the royal family's doctors. i dont think the queen did anything.

SHAME. SHAME ON ALL OF THEM.

You are right Daffodil - shame on all of them!
Yet, I do see a glimmer of hope for the future with the Countess of Mar and Dr. Enlander is trying to reach out again by going over and speaking to the House of Lords.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
The Queen cannot ever interfere in politics
just for those who don't get it, UK is a constitutional monarchy
queen would trigger a constitutional crisis if she got involved in political issues (she's like a "last line" safety valve in governance, not a "string puller")

You want someone to help, write to Prince Charles, guy is grossly under rated, does sh*t ton of good you won't hear about, and his Mum staying on the throne let's him piss off slack-arsed politicians all day :p
 
Messages
180
The Queen cannot ever interfere in politics
just for those who don't get it, UK is a constitutional monarchy
queen would trigger a constitutional crisis if she got involved in political issues (she's like a "last line" safety valve in governance, not a "string puller")

You want someone to help, write to Prince Charles, guy is grossly under rated, does sh*t ton of good you won't hear about, and his Mum staying on the throne let's him piss off slack-arsed politicians all day :p

Prince Charles is a blithering nutcase. This is the person who wants homeopathy state funded by the national health service and congratulated homeopaths trying to treat African AIDS victims with their contentless sugar pills. Underrated my arse, although I'm sure he'll recommend you some nice alternative quack medicine for your ME symptoms, if you ask nicely enough.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Prince Charles is a blithering nutcase. This is the person who wants homeopathy state funded by the national health service and congratulated homeopaths trying to treat African AIDS victims with their contentless sugar pills. Underrated my arse, although I'm sure he'll recommend you some nice alternative quack medicine for your ME symptoms, if you ask nicely enough.

ah huh
and who keeps spinning these lines about him?
why, the tabloid media!
Why?
think about it a loooong minute before replying ;)

he HAS done a vast amount more than you realize, he just doesn't hype it.
By nature I'm against entitled elite, but, he has earned my respect.

as for homeopathy, well it does work better than a lot of conventional systems
why? Placebo/caring/hands on tends to help lot more than iffy drugs and indifference
Not saying I believe in the concept of homeopathy, I see no evidence for that working, but the practice/cutlure/experience helps patients, animal or human
and at least you know it can't bloody poison them! :p
Thus, homeopathy has done more for ME patients in the UK than conventional medicne which hasn't done just bugger all, it's actively got in the way of treatign patients and literally abused them
So, I suggest you are being too quick ;)
go read up on the man's actual help and achievements.

and in Africa, how do you expect governments their to pay for those drug regimes?
when south africans, rightly, said "FU!" and produced their own cloned drugs oh how the pharma corps cried!
Patents, copyright, IP, means of control and blackmail, with drugs it's extortion via threat of murder: pay up or die
anywya, the West has lost the war for the control of Africa's resources, CHina's moving in, will sweep away the ignorant witchdoctors AND evangelical extremist nutcases who're getting in way of saner governance and health care.
Chinese are true, low-key, zero tolerance but smart, pragmatists. they learned from our mistakes
 

drjohn

Senior Member
Messages
169
Letter, Re: I still believe in a cure for my son (Belfast News Letter, 23 February 2012)

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS. PLEASE TWEET AND RE-TWEET ON TWITTER.

Letters to Belfast News Letter.

Before one can hope for a cure (I still believe in a cure for my son, Belfast News Letter, 23 February 2012 -- http://www.newsletter.co.uk/lifestyle/features/i_still_believe_in_a_cure_for_my_son_1_3550493), or a treatment which brings significant recovery from M.E. (Myalgic Encephalomyelitis), it is first necessary to diagnose M.E. as a discrete illness, quite separate from any other single condition which may be subsumed under the indiscriminate collective term Chronic Fatigue Syndrome (CFS),and/or to stop regarding M.E. as synonymous with the whole CFS bundle which, astonishingly, is the norm worldwide.

There isn't a universally agreed diagnostic test for M.E., such as a blood test or scan but to impose any treatment that was tested on people who do not have some of the cardinal symptoms of M.E. - for example, Post Exertion Relapse, that is, a delayed effect of 24-48 hours after quite minuscule effort, often unwitnessed, as well as a kind of dizziness, POTS (Postural Orthostatic Tachycardia Syndrome) and/or Orthostatic Intolerance, that is difficulty in standing upright - on M.E. sufferers, who have a quite different profile, is logically untenable, scientifically invalid and unreliable, as well as, given the anecdotal evidence of patient deterioration and research proof that Cognitive Behaviour Therapy (CBT) is ineffective without relapse and Graded Exercise Therapy (GET) makes a majority worse, morally reprehensible.

M.E. sufferers are better off with no treatment at all - apart from that from a sympathetic GP, for any particular symptom relief, such as pain or sleep disturbance - including those offered in NHS clinics, than one which is disappointingly ineffective and certainly one that may set them back. And this is before the charlatans, purveying alternative and radical techniques, which rely upon belief, get their hands on you and your wallet.

Money spent on the unproven and potentially dangerous cart of treatment would be more intelligently spent on the horse of biomedical treatment, to discover the cause of what we are dealing with here, instead of taking unwarranted risks with patient's health and lives.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
Packed Belfast meeting greets Dr Derek Enlander and launches new Northern Ireland Alliance: http://www.meassociation.org.uk/?p=10673

by Tony Britton on March 7, 2012

One of the largest gatherings of people with M.E. and their carers seen in the UK for many years gathered in Belfast last Thursday (May 1) for a medical lecture by New York physician Dr Derek Enlander and to launch the new ME Alliance Northern Ireland (MEANI)

The main conference room in the Lansdowne Hotel on the Antrim Road was jam packed as about 400 people tuned up from every corner of the Province.

They listened intently as Dr Enlander, an Ulsterman born and bred, talked about his clinical practice and research with ME/CFS patients at the Mount Sinai Hospital in New York. Among the crowd and an honoured guest was Jim Wells, Democratic Unionist Assemblyman for South Down and designate Health Minister for Northern Ireland.

The meeting was organised by Joan McParland, chairwoman of Newry and Mourne ME/FMS Support Group, who said afterwards: I had 277 bookings for places not on the night over 400 people turned up. Every seat in the hotel was carried into the conference room and there were still people standing at the back of the room.

The numbers were way above health and safety limits but thankfully the hotel didnt turn anyone away!

Dr Enlander who engaged with his audience in a Question and Answer session chaired by Dr William Weir, an infectious diseases consultant based in central London travelled to Antrim the following day for an M.E. workshop held by the Health and Social Care Board. This discussed possible ways forward for the development of a comprehensive NHS service for ME/CFS in Northern Ireland.

The Belfast meeting put the final seal on the formation of the ME Alliance Northern Ireland, which its determined to push hard on the agenda for better ME/CFS services throughout Northern Ireland. The Alliance comprises representatives of support groups in Belfast, Newry and Mourne, Mid-Ulster and South Down.

Among other speakers in Belfast were: the Health Minister designate; Michael OReilly, director of the Dublin-based Irish M.E. Trust; and social policy researcher Dr Jay Wiggan from Queens University, Belfast.
 

Firestormm

Senior Member
Messages
5,055
Location
Cornwall England
He also met with Forward ME yesterday at the House of Lords, Enid. I haven't heard anything about that yet but was pleased to see he had been engaging with the Northern Ireland Health lot. NI needs some urgent attention. It' shocking the state of things over there. Shameful.
 

Enid

Senior Member
Messages
3,309
Location
UK
Great news firestormm - I'm waiting to see which members of the medical establishment will attend (at last) the Iime London conference 2012 (all the best researchers) too.