Understanding Severe M.E. Article

Understanding Severe M.E. Article

For anyone wanting to know more about my Information Pack you might find it useful to have a look at the article that Action For M.E. published about it in their magazine, Interaction

Australian Doctor speaks out on Severe ME...

Fantastic to see this on Facebook earlier today...a letter from one of Australia's most pre-eminent ME specialists and passionate advocates re the terrible treatment of Karina Hansen, a very severely affected ME Patient...oh that we had more Severe ME Specialists in the world who are prepared to speak out against members of the medical establishment.

"Who will be held responsible if Karina Hansen dies?

John Whiting via co-cure

Mar 31 2014

Dear readers,

I have been personally involved in a case in Brisbane similar to that of Karina Hansen. At that time, I had no support from my local colleagues. The private hospital legally removed me from my patient's case and I have no knowledge as to whether my patient is alive or dead now.

However, I have also witnessed several other unnecessary deaths here in Brisbane due to ME/CFS under circumstances of medical negligence relating to ignorance over the proper management of these disorders.

In Karina Hansen's case, medical expertise assistance has been offered to her current treating doctors. Unfortunately, Karina's doctors have refused such assistance. I suggest that they fear criticism and accusations of negligence. Karina is literally becoming the sacrificial lamb in the name of psychosomatic illness. However, Karina should not become a martyr to our efforts, that is to ensure that ME/CFS becomes recognised as a legitimate medical illness with real organic underpinnings. Karina's life should be respected, regardless of other agendas.

By now, Karina may well have developed secondary psychiatric phenomena whilst in hospital brought about by inappropriate care due to the ill informed efforts of those trying to help her. The fact that she is still in hospital and is no better and by the sound of things, is much worse than when she was admitted to hospital, in itself, is evidence that her care givers have no idea about the illness that they are trying to treat. How many illnesses do we know of, that require such lengthy in hospital care?

I will assure you that the medical records of her hospitalisation will not reflect the true history of Karina's inpatient experiences. I kept my own personal medical records of the patient I looked after 15 or so years ago, as I could see how my observations differed so greatly from those of other staff (such as nurses) and that what was documented in the hospital records did not reflect the reality of the situation. Her records were clearly doctored in favour of the hospital's image and reputation.

For an individual such as Karina to be denied the right to live or die because of political and so called 'medical controversy' is beyond the bounds of what modern medicine is intended to achieve.

I personally accuse the doctors looking after Karina of medical negligence, on the ground of the information I have cited above. My goal is accountability now, as my prediction is that Karina is no better than she was before and is likely to be much worse and not better since she was admitted to hospital.

Dr John L Whiting
Brisbane, Australia
---------------------------------------------
Send posts to CO-CURE@listserv.nodak.edu"

Severe ME patient reality shown in this video...

Great 3 minute video appearing on you tube at mo...produced by charity Action for ME...good to see a photo of severely affected patient shown first up...people need to see more tubes, more catheters, more bedridden patients...how else will they understand?

Please share...

http://youtu.be/3aBfoGeUXUg

Action For ME CEO on The Wright Stuff on Monday

Tune in tomorrow guys...Channel 5 ...9.15am...let's hope it really helps raise awareness...might even phone in myself to get the message across for Severe ME Patients and their Carers

http://www.actionforme.org.uk/get-informed/news/our-news/ceo-on-the-wright-stuff-on-monday

Severe ME Nurse dies - Tribute to Theresa Hawksworth

Theresa was a very special lady.  A wonderful wife.  An amazing mother.  A beloved daughter and sister.  A great friend.  She was also an amazing nurse.  Theresa devoted her life to the care of others, always looking for ways to help and ease people’s pain.  None more so than the hundreds of ME Patients in Stockport who were so incredibly lucky to receive her support, guidance and understanding along their recovery road, first as a Specialist Nurse in SMEG's ME Outreach Nurse Service and then in East Manchester’s ME/CFS Adult Service.

I was one such ME Patient.  Back in 2000, very severely affected, I was little more than a breathing corpse who lay in a blacked out room in constant pain, unable to talk or walk.  Fed, watered, washed, dressed and cared for 24/7 by my family, just like a baby, for the best part of 2 years.  My recovery road was a long one, but it was made that much more bearable with Theresa as my guide.  Her compassion knew no bounds and for my husband, Andrew and I, she was an absolute tower of strength.

The very fact that Theresa became a Specialist Nurse for ME, an illness cruelly dogged by disbelief and doubt speaks volumes about the woman she was.  She was not afraid to become a champion of ME patients.  She was not afraid to challenge the medical establishment's erroneous beliefs about this physically disabling illness.  She was not afraid to stand up for those who could not stand up for themselves.  

Over the years of my recovery Theresa and I became great pals.  Even after she had left the service we stayed very much in touch.  And whenever we got together I never ceased to be bowled over by her sunny personality, her love of life.  A life that should have been a long and healthy one, a life that should not have been stolen by Cancer. 

I shall miss her incredibly but feel blessed to have known her and had her in my life albeit for a tragically short time and every time Andrew and I do something together...something that when I was so very severely ill we wondered if we would ever do again...at those times, those weddings, those holidays, those get togethers...I shall always remember Theresa and give thanks to this special lady, who helped make all these wonderful things possible for me. 

Severe ME Patients deserve care and compassion too...

Sadly over the last year a dear friend of mine has been battling bowel cancer.  She has received fantastic compassion and care from a huge team of medical professionals...at home...at hospital...and now sadly in a hospice.   And rightly so.

However, I cannot help but wonder why severely affected ME Patients are not given that same level of care and compassion?  Severe ME may not be a terminal illness but it takes patients' lives.  It is high time that patients receive the treatment they deserve.

Not One More Patient Should be Denied Care in Error -

Please watch and share this new video from The Coalition for Diagnostic Rights...Karina Hansen is referenced towards the end

Care for Someone with Severe Myalgic encephalomyelitis

Well done to Greg Crowhurst who has cared for his severely affected wife, Linda, for 20 years and not only set up a fantastic and informative website, www.mesupport.co.uk, but who has also e-published a book:  Care for Someone with Severe Myalgic Encephalomyelitis

Here's the link to find out more:

http://www.mesupport.co.uk/index.php?page=care-for-someone-with-severe-m-e

Severe M.E. Patient, Karina Hansen needs your help...

Fantastic link below to article by USA website www.prohealth.com about the shocking case of Danish teenager, Karina Hansen, who is very severely affected by ME, being forcibly removed by 5 policemen, 2 doctors, 2 case workers from her loving parents and locked away in a Mental Ward.

Please read and share to help get this poor girl released from her living hell and to get the expert M.E. treatment she so desperately needs.

One Year Later - Karina Hansen Still Confined in Mental Ward

Severe M.E. - The fight for help, support and understanding continues

Well, it's been over a year since my last post, so first of all let me say a huge SORRY for deserting you. I guess I had secretly hoped that the need for my blog and Information Pack had passed and so I turned my attention to making up for all the years my husband and I had lost to my Severe M.E.  But last week I heard the tragic plight of Karina Hansen and felt compelled to re-start this blog to do what I can to help overcome the ignorance that still seemingly surrounds Severe M.E.

Karina is a Severely affected M.E. Patient forcibly removed from her home and her parents in Denmark and incarcerated for psychiatric treatment.  Her story will break your heart.  I know it broke mine.  On the 12th February 2014 it will be 1 year since this poor girl was sectioned and locked away.  We all need to do whatever we can to help get her out of her hell hole and back to her loving family, away from these cruel and heartless Danish psychiatrists who shockingly claim this physically disabling illness is all in her mind; despite The World Health Organisation clearly stating that M.E. Is a neurological illness, and placing it in the same group as Parkinson's and Multiple Sclerosis.

For more information about Karina and ways to help the Justice For Karina campaign go to

https://www.facebook.com/JusticeForKarinaHansen

and

http://mecfsblog.com/category/karina-hansen/

Severe M.E. - Great Expert Source

Hi everyone, Dr Myhill's fantastic website is back up and running again.  The 'Fatigue' category on her website is the one most relevant to M.E. - just scroll down list of categories on left hand side of home page. But don't worry, this is one Doctor who totally gets that M.E. is so much more than mere tiredness. This wonderful Doctor has been helping M.E. patients for years.

http:/www.drmyhill.co.uk

Witch Hunt of Dr Sarah Myhill

WalesOnline - News - Health News - ME doctor faces suspension over website complaint

Dr Myhill is one of the few UK Doctors who truly understand ME and make it their life work to help Patients. I am horrified by the Greater Medical Council's treatment of her...to me it seems she is being harassed for nothing other than actually trying to help ME Patients recover...I myself benefitted greatly from her advice on her website and B12 Injections have helped me enormously.

Lets just hope that the GMC sees sense soon.

Severe M.E. Documentary to be made!

Have just heard about a very interesting venture which I think you will all want to read about/get involved with.  Here's the link:

www.whataboutme.biz

Brilliant letter from Invest in ME to UK Secretary of State for Health!

Have to say a huge WELL DONE to Invest in ME today!  Just been emailed a copy of a letter they have sent to the Secretary of State for Health...and ya just gotta read it, it is bloody brilliant!  It just goes to prove (as if we needed any more proof) just how useless our Government is when it comes to ME Patients and their carers! Here's hoping they address the issues Invest in ME so skillfully raise...

Let me know what ya think, email is www.understandingsevereme@hotmail.co.uk

http://www.investinme.org/Article-700%20SSfH%20March%202010.htm

Severe M.E. Pack - Word is spreading

Feeling chuffed this morning as I received another order from a NHS ME Clinic for My Information Pack!  It seems that word is spreading to ME Patients and their Carers right across the UK.  I spoke with the family of a Severe ME Patient last week, another Patient who had basically been abandoned by her GP - they gave said GP a copy of my Pack to read, and amazingly he has now started to actually be proactive and try to help his desperate Patient and her Carers.  Wonders will never cease.  So please, please, keep spreading the word so that Patients and their Carers begin to get the help and support they so desperately need. Thank You!

Fantastic ME letter published in Daily Telegraph

SO GREAT TO SEE ALL THE M.E. CHAMPIONS JOINING TOGETHER TO EFFECT CHANGE FOR M.E. SUFFERERS...THANK YOU...

Breaking the ME enigma
SIR – The death of Lynn Gilderdale and the humane verdict in the trial of her mother brought home to many people for the first time what a devastating illness myalgic encephalomyelitis (ME) can be.
Many of the estimated quarter of a million people with ME in Britain experience not only extreme pain and disability, but also incomprehension, ignorance, lack of sympathy and at times outright hostility, not only from the public but also from professionals responsible for their care.
Such lack of understanding even extends to blaming parents for the severity of their child’s illness.
It is time the nation began to take ME seriously. Provision of adequate clinical and other services by properly informed and sympathetic professionals is currently subject to a postcode lottery. Such provision should avoid inappropriate treatments, and range from support for home tuition for school-age children to respite care for the severely affected.
Above all, we should fund biomedical research to resolve the enigma of the underlying pathology of this illness. We should build on recent scientific advances to develop effective treatments, so that no one in future need experience the pain, isolation and despair that were Lynn Gilderdale’s fate.
Countess of Mar
Secretary, All Party Parliamentary Group on ME
Dr Neil Abbot
Operations Director, ME Research UK
Jane Colby
Executive Director, The Young ME Sufferers Trust
Anne Faulkner
Hon Director, CFS Research Foundation
Tanya Harrison
Chairman, BRAME
Malcolm Hooper
Emeritus Professor of Medicinal Chemistry, University of Sunderland
Andy Kerr MSP
Dr Jonathan Kerr
Consultant Senior Lecturer, St George’s, University of London
Simon Lawrence
Chairman, 25 per cent ME Group
Kathleen McCall
Chairman, Invest in ME
Dr Luis Nacul
Consultant in Public Health, London School of Hygiene and Tropical Medicine Professor
Derek Pheby
National ME/CFS Observatory
Neil Riley
Chairman, ME Association
Dr Charles Shepherd
Dr Nigel Speight
Sir Peter Spencer
Chief Executive Officer, Action for ME
Des Turner MP
Chairman, All Party Parliamentary Group on ME
Dr William Weir
Mary-Jane Willows
Chief Executive Officer, Association of Young People with ME
Andrew Stunell MP
Vice Chairman, All Party Parliamentary Group for ME/CFS

Autopsy recognises clear physical manifestation of ME

Worthwhile showing to any Doubting Thomases out there...Autopsies do not lie.

'UNDER the microscope, it could not have been clearer. Sophia Mirza’s brain and spinal fluid showed indisputable evidence of inflammation and cell death.

The discovery, by the neurologist Abhijit Chaudhuri and a neuropathologist colleague, marked the first time a serious abnormality confined to the central nervous system had been identified at the post-mortem examination of a patient whose principal diagnosis was chronic fatigue syndrome.

In turn, that ensured the 32-year-old became the first person in Britain to have the syndrome – also known as myalgic encephalomyelitis – recorded as the cause of her death.'

http://www.meassociation.org.uk/2007/04/sydey-morning-herald-april-12-autopsy-evidence/

Lynn Gilderdale’s moving account of why she decided to end her life - Guardian On line

Heart breaking reading but necessary if you want to begin to understand the hell on earth that is Severe ME. I do know the hell that Severe ME is...I was little more than a breathing corpse for over 2 years...but I was one of the lucky ones to get better...Lynn wasn't, and with tears streaming down my face, having read Lynn's own words in the Times article below, I just wish that I could have met that brave, brave girl.
Shame on all the 'powers' that failied Lynn and allowed Lynn and her family to go through this suffering...it is time that Severe ME gets to the top of everyone's agenda...NHS, Research Bodies, Government...I really don't care, but PLEASE will someone do something to ensure that we are not reading another story in ten years times of another young life wasted.

http://www.theguardian.com/society/2010/jan/25/lynn-gilderdale-me-assisted-suicide

Kay Gilderdale cleared of attempting to murder her daughter with ME

FAN-BLOODY-TASTIC NEWS!

http://www.theguardian.com/uk/2010/jan/25/mercy-killing-kay-gilderdale-cleared

Hang on to Hope

Hi everyone, as my readers will know, ten years ago, I was little more than a breathing corpse, so severe was my ME...all I wanted over Christmas 1999 was someone to take my hand and tell my husband and I that one day all this pain and suffering would be a dim, distant memory, but no one could, we just didn't jnow of anyone who had recovered from very severe M.E.

I am hoping that today I can extend my 'virtual' hand out to everyone who is so very ill with ME over Christmas, and say 'hang in there, you will get better, I truly know how hard it is to remain hopeful when everything seems so very desperate, but do try to hang on to hope, it will help you stay sane whilst your body is fighting its way back from Severe ME, and fight its way back it will'.

I am making a great recovery and beginning to enjoy life again, and I just wanted to give you all the hope that I wish someone could have given me over Christmas 1999. Wishing you all a healthier 2010. LOL Cathy xxx