UNDERSTANDING SEVERE M.E.

Spreading the word in the NHS...

2010-11-09T08:13:00.000-08:00

Just a quick posting today...just wanted you to know that I will be speaking to my first groupd of NHS Medical professionals in November in Manchester, explaining to them the harsh realities of Severe ME and making them understand what they need to do to help their ME Patients. Hopefully this will be the first talk of many! Wish me luck.

At long last good piece on ME causation on BBC

2010-09-16T02:32:00.000-07:00

ME 'could be caused by a virus' http://www.bbc.co.uk/news/health-11209605 Scientists in Scotland have found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus. 1 of 1Choose a thumbnail No thumbnail

Simon Wessely ME Child Abuse Scandal

2010-05-26T09:06:00.000-07:00

Dr Myhill ungagged

2010-05-10T09:47:00.000-07:00

http://www.doctormyhill.com/frame.php

Hi everyone, a lovely person over the pond has set up a mirror site of Dr Myhill's website (which the GMC are trying to have taken down), so above is the link to the mirror site. Please pass on to anyone who needs it!

General Medical Council's continued madness...

2010-05-08T09:08:00.000-07:00

Ok, now I am hopping mad. Dr Myhill, who has only ever helped ME Patients...banned from prescribing B12 Injections that are so helpful in dealing with ME symptoms...and medical record tarnished. Now read the story below...is there any sense in this world...

3. Killer Doctor Cleared By General Medical Council

A Shropshire woman was left in tears after a surgeon who performed a botched operation which resulted in her daughter’s death walked away from a General Medical Council hearing. Louise Field, 27, died two days after vascular surgeon Dr Michael Ormiston accidentally punctured her lung and pumped gas into her stomach at the BUPA Hospital, Harpenden, Herts. Dr Ormiston admitted making inaccurate records after the operation and was slammed by the GMC panel yesterday for “significant departures from good medical practice”. The panel cleared him, however, of serious misconduct and found that his fitness to practise was not impaired. The panel also decided against issuing the surgeon with a warning. Mrs Green wept on hearing Dr Ormiston could carry on with an unblemished medical record.
Simon Hardy, Shropshire Star
Related Links:
* General Medical Council Killer Doctor Nepotism Puts Lives At Risk
BBC News / The One Click Group

GMC ruling re Dr Myhill absolute travesty of justice

2010-04-29T09:47:00.000-07:00

http://www.drmyhill.co.uk/drmyhill/images/7/76/Cfs_book_27.pdf

Dr Myhill's motivation has and always will be to help ME Patients recover.

Today's General Medical Council's decision to ban her from prescribing much needed drugs to her patients is an absolute disgrace. In a world where Doctors who actually understand ME are so rare, is it the GMC's intention to ensure that Patients never improve? Why else would they treat Dr Myhill so appallingly and deprive her patients of her expertise and understanding?

It seems that they are going to try and block her website too (www.drmyhill.co.uk) so just in case, I am attaching above a PDF file containing a copy of her fabulous book in PDF document which she makes available free of charge on her website. Her knowledge and expertise in treating ME must not be lost. Please pass on to anyone who needs it.

Witch Hunt of Dr Sarah Myhill

2010-04-20T09:42:00.000-07:00

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.

ME Documentary to be made!

2010-03-23T09:11:00.000-07:00

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!

2010-03-15T04:25:00.000-07:00

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

Word is spreading...

2010-03-11T01:52:00.000-08:00

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!

Also, came across an excellent blog the other day, so thought I would share it with you all:

www.niceguidelines.blogspot.com

Check it out!

Fantastic ME letter published in Daily Telegraph 6 Feb 2010

2010-02-08T02:19:00.000-08:00

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 - full Times article link below

2010-01-31T09:12:00.000-08:00

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

'...At the inquest the next year a neuropathologist told the court that Miss Mirza’s spinal cord was inflamed and three quarters of her sensory cells had abnormalities. It was, the court heard, a clear physical manifestation of ME. The coroner ruled that she had died from “acute renal failures as a result of chronic fatigue syndrome”...'

They told dying daughter she was lying, says ME mother Criona Wilson - Times Online

Kay Gilderdale/ME Panorama Special Feb 1st 8.30pm

2010-01-28T07:23:00.000-08:00

There has been so much coverage re Kay's recent trial over the assisted suicide of her Severe ME daughter, Lynn, that I have had to just stop trawling through it all, take a breath and take stock.

Surely this must mark the start of people beginning to comprehend the hell on earth that is Severe ME...it may not be a terminal illness but it takes lives...it took mine for several years, it took Lynn's, and I do not want another single sufferer to be abandoned as Lynn was.

I truly hope that the question Panorama asks on Monday is not 'Should assisted suicide be legal?', but the real question 'Why was this poor girl and her family left to suffer Severe ME for 16 years? Why has there been no decent research into this disabling illness? Why are thousands of sufferers still out there suffering? Now those are the questions I want answered.

www.bbc.co.uk/programmes/b00qs930

Lynn Gilderdale’s moving account of why she decided to end her life - Times Online

2010-01-26T08:45:00.000-08:00

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.

Lynn Gilderdale’s moving account of why she decided to end her life - Times Online

Can good come out of bad?

2010-01-25T09:38:00.000-08:00

I had really hoped that something good might eventually come out of Kay Gilderdale's trial...and perhaps this is the start of something positive...informed, compassionate articles by decent Journalists in the mass media...I truly hope that this is the first of many that I find...

‘Doctors, school, friends thought I was faking chronic fatigue syndrome’ - Times Online

Kay Gilderdale cleared of attempting to murder her daughter with ME

2010-01-25T09:28:00.000-08:00

FAN-BLOODY-TASTIC NEWS!

Kay Gilderdale cleared of attempting to murder her daughter with ME - contains video

Father of ME victim Lynn Gilderdale defends former wife - Times Online

2010-01-20T01:18:00.000-08:00

Trial continues for Kay Gilderdale...report on first day of defence below...heartbreaking and harrowing reading, but necessary.

Father of ME victim Lynn Gilderdale defends former wife - Times Online

Trial of Mother over death of ME sufferer daughter is a National Disgrace

2010-01-19T01:40:00.000-08:00

Newspaper coverage is starting to come in from the trial of Kay Gilderdale, mother to Lynn, who suffered Very Severe ME for 16 years, from the age of 14.

As someone who endured the paralysed/bedbound/lying in darkness hell that is Very Severe ME for over two years, my heart goes out to Lynn's mother.

Watching my own mother and Andy's mother witness my pain and suffering as they helped to nurse me back to health...well, lets just say that seeing their face etched with grief and helplessness, day in day out, was truly one of the hardest things to bear.

Sending all my love and strength to Kay and praying that this trial gets thrown into the gutter where it belongs, I am just so furious that this case has even come to trial. Shame on our Legal System, or should that be Legal Shambles...

Links to newspaper coverage below:

Mother, Kay Gilderdale, in court over death of ME sufferer daughter, Lynn - Times Online

Mother ‘gave daughter two syringes of morphine to end ME misery’ | News

Daily Mail apologises for insulting ME Poll!

2010-01-18T04:32:00.000-08:00

Hi all, just wanted to say a huge THANK YOU to everyone who emailed The Daily Mail to complain about their recent insulting on-line 'Is ME a genuine illness' poll...you will be pleased to hear that they have apologised and removed said poll. To get such a swift apology from a National Newspaper...well, that is a massive achievement for all of us, so well done everyone, huge pat on the back to you all!

Am attaching below the email apology I received:

'Dear Catherine.

Thank you for your email.

First of all, let me apologise sincerely for any offence that may have been caused.

The poll to which you refer was posted by a junior member of staff of Mail Online in response to a story which questioned once again the causes of ME.

As I am sure you are aware, there is still a great deal to learn about what lies behind the condition. However, I entirely accept that this is completely different from suggesting that the condition itself is not real, regardless of the cause.

I am pleased to report that once the clumsy nature of the poll was drawn to more senior staff's attention it was immediately removed from the website.

The Mail - both the paper and online - prides itself on its coverage of medical matters and has devoted much resource over the years into covering the search of the causes and a cure for ME. Rest assured that we will continue to do this and that its sufferers continue to enjoy our full sympathy and support.

We do appreciate all feedback - whether positive or negative - and I am particularly grateful to you for taking the time and trouble to draw this to our attention.

With best regards,

Charles A Garside
Assistant Editor

Online managing editor
sarah.graham@dailymail.co.uk
www.dailymail.co.uk
www.mailonsunday.co.uk'

Shame on The Daily Mail

2010-01-08T12:42:00.000-08:00

I am so angry I just had to copy you in on my recent email to The Daily Mail, prompted by their recent On Line Poll question "Is ME a genuine illness?". I am so angry, I am physically shaking...here is my response, and please feel free to email your own response to them at: feedback@dailymail.co.uk or email the Daily Mail's head honcho at martin.morgan@dmgt.co.uk

Poll link:

http://www.dailymail.co.uk/debate/polls/poll.html?pollId=1015226

--------------------------------------------------------------------------------------------------------------------------------------------------------------------

'Dear Editorial Team at The Daily Mail

I am writing to complain vehemently about the poll The Daily Mail is running as to whether ME is a genuine illness.

I lost a decade of my life to Severe ME, and am so angry with your newspaper, I am physically shaking with anger.

Would you be running a poll re HIV, AIDS, Cancer, no of course you would not, well, check this quote out:

"...People with ME, are as sick and as functionally impaired as someone with AIDS, with breast cancer, with chronic obstructive pulmonary disease," said Dr William Reeves, the lead expert on the illness at the Center for Disease Control and Prevention. Excerpt from the New York Times, July 17 2007

And in fact The Daily Mail on December 9 2008 ran a feature on ME Patient Lynn Gilderdale, by Gill Swain, in which your very own journalist quoted as follows:

"Before meeting this remarkable mother and daughter I had seen African children suffering from starvation, met people dying of AIDS, patients paralysed from the neck down, others in the last stages of terminal cancer. But I had never seen a living person as desperately ill as Lynn Gilderdale" (who was diagnosed with ME at the age of 14).

Shame on you Daily Mail for this ridiculous poll which is insulting to Lynn's memory and to the ongoing suffering of over 250,000 ME Patients in the UK alone.

Yours sincerely

Catherine Saunders'

Hang on to Hope

2009-12-23T03:35:00.000-08:00

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

Feedback to Severe ME Info Pack so far!

2009-12-13T02:43:00.000-08:00

Hi everyone! I have received several emails asking if I have any feedback to my Severe ME Info Pack that I could share on my blog and I am very chuffed to be able to post the following snippets...now cue me turning red with embarassment...

"This is excellent - you should be really proud of what you have acieved!"
T Hawksworth
Former Specialist ME Outreach Nurse Stockport 2008

"Thrilled to hear how well you are doing - you are a real inspiration. I would be very interested in your Pack - there is not enough information around relating to Severe CFS/ME."
G Walsh
Former Specialist ME Outreach Nurse Stockport 2008

"...and gave my student OT one of your pieces to read - your knowledge and experience is already touching others. Keep Going..."
Occupational Therapist,
CFS/ME Team, Essex

And perhaps my favourite...

"If only we had had this kind of information when you were so ill...we would have understood what you were going through...we could have saved you from so much of the pain and suffering...we would have known who to turn to!
Mrs I Saunders
Mother of Very Severe ME Patient 2009
(My mum!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!)

Check out Severe ME video on You Tube

2009-12-03T03:22:00.000-08:00

Hi all.

Wanted to tell you about a fantastic video that Vikki George, a recovering Severe ME Patient, has produced on You Tube...it is brilliant so please check it out as soon as you can - here is the link:

http://www.youtube.com/watch?v=AUPkja02uR4

Vikki has done a great job making this video, so please pass the link on to everyone you know, my little sister did and and I think her message is worth repeating here, she sums it up so well:

"Hi everyone, this one is not a chain-mail that I am passing on. This is a message straight from my heart.

There is a link to a You tube video below regarding Severe ME. My sister in-law is in it (Cathy). It has been created to try and highlight the plight of many, many people living with the hell of Severe ME. Please take the time to watch it...

Cathy missed my engagement, my wedding, and the birth and early childhood of my first son, Lucas. She now is doing awesome, but it took 12 years to get to where she is now. Please pass the message on, it really is a powerful way to make people aware of how utterly disabling and terrifying Severe ME is.

http://www.youtube.com/watch?v=AUPkja02uR4

Thank you. Sarah xx"

You will also be pleased to hear that my Understanding Severe ME Information Pack is now being used by 5 NHS ME Units in the UK, which I am thrilled about! I so hope it will help those severely affected patients who are following in my wake.

Gotta go now, Info Packs to post! Take care c x

Sophia's story

2009-11-05T03:46:00.000-08:00

Hi there everyone, sorry this posting has been delayed, I got floored by a nasty cold for a couple of weeks, pretty rotten but as every recovering ME patient understands, always a relief to come out the other side.

I was going to talk about my 2000 admission to Professor Findley's specialist ME/CFS Unit Romford, but I stumbled across a website last week that I just have to share with you: www.sophiaandme.org.uk. I urge everyone to visit this site and read the story of a young girl called Sophia who had Very Severe ME, was sectioned and incarcerated in a Mental Hospital by her ignorant, arrogant and cruel Doctors who insisted on treating her as if she was suffering from a mental illness, rather than a disease clearly categorized by the World Health Organisation as being a physical neurological disease.

Sophia never recovered from that incarceration. She died in 2005. Her treatment and death must never be forgotten.

I read her story and wept, as I am sure you will too. I found myself reflecting on just how lucky I was not to suffer the same fate as Sophia, which so easily could have been the case had I lived in another postcode, had I not been fortunate enough to receive the right treatment at the right time; and then feeling a wave of fury so intense, so raw, to realise that severely affected ME Patients are still being treated so inhumanely by some members of the Medical Establishment. I know from personal experience that there are many wonderful, caring, Doctors, Nurses, OTs, Physios, Dieticians within the NHS who really do understand Severe ME and their numbers are growing; however I also know that there are many, many more who do not nor do they seem to want to even try and understand the hell their Patients are enduring.

So what can we do? Shout Sophia's story from the roof tops. Tell every one you know about her website. Do not let Sophia's death be in vain.

My Severe M.E. Recovery Story (Part 2)

2009-10-15T03:43:00.000-07:00

Right then, here I am for my weekly posting. Before I get started on to Part 2 of my recovery story, I just have to tell you that I am in somewhat of a state of shock...the interest in my Severe M.E. Information Pack over the past couple of weeks has been absolutely amazing, and you will be glad to hear, not just from concerned Friends and Families of Severe M.E. Patients but from Medical Professionals too...now that has to be good news, so thank you to everyone who is spreading the word and keep your fingers crossed that it continues!

Anyhow, on to my admission to Professor Findley's specialist CFS/ME Unit in Romford Essex.

It was a Monday morning in February 2000 when we heard I had a place; another Patient had had to forego their place as they were simply too severely ill to make the journey. When my husband told me, my emotions went wild...on the one hand I was ecstatic to finally be on my way to some expert medical help, but christ I was scared, really really scared.

I had been bedbound for 2 years. My recovery had only just begun. I had only just come out of the hellish light sensitive phase. I could only walk 8 paces to and from our bathroom 4 times daily. I could not sit up. I could only talk in whispers. I was still being spoon fed. I had a huge hole cut out in the back of my pyjama bottoms because when I finally made those 8 paces to our loo, I was simply too unsteady and weak to pull down my PJ bottoms. I had to have ice packs on my legs and arms 3 times daily to try and ease the pain. How the hell was I going to make the 4 hour journey from Manchester to Romford?

For the next 3 nights I remember waking in a cold sweat, shaking from head to foot, sobbing my heart out...that's how terrified I was; it was only the loving arms of my husband which could calm me down; as soon as he heard me crying in the middle of the night, in he would rush to comfort me ( we had not been able to share a bed for 2 years as my constantly jerking limbs would wreck his sleep and at times even the slightest touch from him my limbs would burn with pain for hours). Deep down I knew I had to get to this Unit but how would I find the strength?

Thursday morning arrived. Spoon fed by my husband early. Desperately trying to keep breathing slowly to stay calm. 9am, the ambulance arrived. Carried from my bed, strapped into their chair, down the stairs they carried me, past my mum and mother in law, both there to see me off, before they too headed down the motorway with all my bits and to drive my husband back that evening.. I remember feeling their strength, fixed smiles on their faces, trying to mask their own fears as I was carried into the ambulance. Many months later, my mum told me she could barely stop herself from fainting with shock when she saw me...in my dimly lit bedroom, no one had really been able to see how ravaged my body had been by this illness. At 5'10" I had always had a healthy, athletic build, about 10-11 stone; down at Romford, I discovered I weighed less than 7 stone.
The journey was a nightmare; laying down yes, but limbs so sore from the motion of the ambulance, my head throbbing, my neck in terrible pain. Again, it was only Andy's presence that kept me calm.

2.30pm we arrive on Ward B1. I have never been more terrified in my life. And here I would stay for the next 6 weeks.

What lay ahead of me I had no idea. Did we make the right decision in bringing me here? Would this Unit be able to help me? The short answer is yes, but I am out of time now for this week's posting after telling you all about getting there, but I did think it very important for Friends and Families to appreciate the difficulties involved in moving Severe M.E. Patients around the country. Sometimes getting a place for a Severe M.E. Patient in a specialised Unit is the 'easier' part, the actual practicalities can often prove just too much for some very severely affected Patients, so please, please try to understand that if that is the situation with your loved one. Anyhow, I will have to get into the detail of how they helped me next week. See you then.

My Severe M.E. Recovery Story (Part 1)

2009-10-06T04:08:00.001-07:00

When I started this blog I had no idea whether anyone would find it at all useful...but after so many enquiries into how I recovered, I find myself attempting to summarise my recovery story into a few pages. Here goes...

My M.E. story began in Summer 1997 - happily married, Account Director of a Marketing Consultancy, active, sporty, great social life, lots travelling, I worked hard, I played hard, life was good. Then came Mild M.E. after a recurrent bout of tonsillitis treated by antibiotics. Luckily I was diagnosed early by my GP, unluckily she sent me to a local Psychologist specialising in Cognitive Behaviour Therapy who recommended a return to work part-time; I heeded her 'go for it' advice, collapsed 1 week later and deteriorated rapidly into Very Severe M.E. Strangely enough, she was then nowhere to be seen...

Back in 1998/99 I was little more than a breathing corpse. For the best part of 2 years all I could do was lay in a blacked out room in excruciating pain, unable to talk, walk or tolerate a glimmer of light. Totally bedbound, I had to be fed, watered, washed, dressed and nursed by my husband, mum and mother-in-law, just like a baby. Unable to walk even 8 paces to our bathroom, bedpans were a daily necessity.

For me, Very Severe M.E. felt like being paralysed from within, but during those years I received no useful medical treatment - I can still hear the comments of the few doctors that did come to see me: 'its a shame you don't have Multiple Sclerosis, I could treat that', and from my original GP: 'don't waste my time, there's nothing more I can do for you'.

Thankfully at the beginning of 2000 my body/brain started to self-correct and I came out of the hideous light sensitivity stage and began to take baby steps on the recovery road; simultaneously, having changed GP, my husband then obtained PCT funding for a 6 week in-patient admission to a specialist unit that could do something for me: Professor Findley's brilliant ME/CFS Unit in Romford, Essex, where I benefited so much from their expertise in treating Very Severe cases.

Yes, it has taken several years of hard slog including terrifying relapses along the way, but I am now 90% recovered. I am one of the lucky ones. I am living proof that even the most severely affected M.E. Patients can recover, given the right advice, the right treatments, the right support, at the right time.

But I know that not all Patients are as lucky as me.

Which is why I have produced an Information Pack (see posting below of September 2009) to help those poor buggers following in my wake. It contains all the information that I so wish had been available to my friends and family, when I was too ill to speak for myself. Really hope it helps.

And next week I will start Part 2 of my Recovery Story, telling you about exactly how Professor Findley's team helped me. See you then.

How to order Severe M.E. Information Packs

2009-09-28T04:52:00.000-07:00

To order a Severe M.E. Information Pack, as described in posting below of 21/09/09, simply email your enquiry to

www.understandingsevereme@hotmail.co.uk.

An Order Form and full details of how to purchase will then be sent to you. Packs will be sold at £10 plus £1.95 P&P, but P&P discounts will be available for bulk orders.

You will also be pleased to hear that 25% of net profits from sales of the Information Packs will be shared between the following charities (in alphabetical order)

Action For M.E.
Association of Young People with M.E.
Invest in M.E.
M.E. Research UK
National Centre For M.E.
Stockport M.E. Group
The M.E. Association
The 25% Group

UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E. - UNDERSTANDING SEVERE M.E.
Essential reading for Family & Friends of Severe M.E. Patients

Severe M.E. Information Pack Launched

2009-09-21T04:23:00.000-07:00

Today sees the launch of something I have been working on for the last 2 years: 'Understanding Severe M.E. Information Pack' and that makes me (not to mention my mum) pretty proud.

During my recovery from Very Severe M.E. I became more and more shocked and dismayed by just how few people really understood the hell that I was going through and so decided to do something about it.

So here's the press release blurb for the Pack... bit poncy, but once a gobby Marketeer, always a gobby Marketeer...

‘UNDERSTANDING SEVERE M.E. INFORMATION PACK

Essential reading for Family & Friends of Severe M.E. Patients’

Know someone with Severe M.E.? Don’t understand what is happening to them? Don’t know what to do or say? Or are you a Patient or Carer living with Severe M.E. and just want something that explains to people the hell you are going through?

Either way, this Information Pack is for you.

M.E. (Myalgic Encephalomyelitis) is a cruel and disabling illness which wrecks thousands of lives, none more so than those who suffer the most extreme version of the illness, Severe M.E.

Few people understand or appreciate the true impact of this illness, and for the millions of relatives and friends of patients, it can be a terrifying time.

In ‘Understanding Severe M.E.’, Cathy Saunders draws upon her own inspirational recovery from Severe M.E. to explain the cruel reality of the illness:

‘Before I became very severely affected back in 1998/99, I used to think, like many others, that Severe M.E. was just about being tired. How blissfully ignorant I was. Severe M.E. may not be a terminal illness, but it takes people’s lives; I know, because it took mine for several years, and it was a great life that I had stolen from me...happily married, Account Director of a Marketing Consultancy, active, sporty, great social life, lots travelling,... you get the picture.

And then, for the best part of 2 years I was little more than a breathing corpse. All I could do was lay in a blacked out room in constant pain, unable to talk, walk or tolerate a glimmer of light. I had to be spoon fed, watered, washed, dressed and nursed by my husband and family, just like a baby. Unable to walk even 8 paces to our bathroom, bedpans were a constant necessity.

And one of my promises to myself was to do all I could, once strong enough, to help family and friends understand what it is that their loved one is going through, what Patients and their Carers have to battle against every day, and how their understanding, support and compassion can make such a dramatic difference to the speed of recovery.

Severely affected M.E. Patients can recover, and we do recover, but only if we are given the right advice, the right treatments, the right support, at the right time and I firmly believe that the understanding of friends and family can make the difference between recovering and not recovering’.

In this immensely positive, hopeful and easily accessible Information Pack, Cathy addresses the many questions, worries and fears that family and friends have about what is happening to the Patient, sign-posts the way to expert sources of information and treatments, and most importantly suggests hundreds of ways in which they can ease the burden for the Patient and their Carer, both practically and emotionally.

‘UNDERSTANDING SEVERE M.E,

Essential reading for Family & Friends of Severe M.E. Patients’

Information Pack will be sold at £10 plus £1.95 P&P, with P&P discounts available for bulk orders.

To find out how to order copies of this Information Pack, email your enquiry to

understandingsevereme@hotmail.co.uk