NICE – not so nice!                                            Also, update on happenings in Ireland

NICE – not so nice! Also, update on happenings in Ireland

 

The NICE guidelines

The National Institute for Health and Care Excellence (NICE) was due to review its guidelines on M.E., guidelines which include dangerous GET (Graded Exercise Therapy) and CBT and have caused harm to M.E. patients.

However, shortly after the CDC (Centers for Disease Control and Prevention) updated its website, removing GET and CBT for M.E. (incorrectly called ME/CFS in the U.S.) and improving the diagnostic criteria (although these new criteria are still not the best), it was decided to dismiss the review of the NICE guidelines.  Coincidence?  I think not!

For decades, the psychiatric lobby in the U.K. wielded power in the field of M.E.  Let’s think for a moment of the advantages of this:

They have made a handsome living
They have had “prestigious” careers
They have had their “papers” published
They have received “awards”
They have had knighthoods

Not bad innings, really!  Those are the advantages to the psychiatrists only.  They’ve also saved the British government so much by denying actual and proper treatment to M.E. patients and ignoring all biomedical research papers (approx. 9,000).  One wonders how this is possible?  It sounds like a conspiracy theory, right?  Wrong!  That’s what they did, that’s what they’re doing and that’s what they hope to continue to do.

However, I think one of their biggest mistakes will be that they underestimated M.E. patients.  Unlike decades ago, we are now actively involved in what’s going on, we are aware, educated and well-informed.
We KNOW our own illness AND we KNOW the political construct that surrounds it.
We have also succeeded, with help, in getting scientific researchers/doctors/journalist to back us.
Not bad for such sick people, most of us housebound or bedridden.

Here is the NICE Surveillance programme:

NICE Surveillance Programme

Please note that one of the following two statements appears in 13 (yes, thirteen!!) categories in the NICE Surveillance Programme

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Each of those statements is the antithesis of science and says it all.

The psychiatric lobby has no business in our illness.

M.E. is a physical illness.  It is categorised as a neurological illness by the WHO (World Health Organisation).  Psychiatrists involved in M.E. deal in anti-science.  To their shame, they also deal in petty squabbles and mean tactics.

Psychiatrists need to be removed from everything related to M.E.

M.E., being a physical illness, has nothing to do with them.
They deal in anti-science.
They have done enough damage to patients.
They obviously are devoid of conscience.
They do not care about patients.
They do not care about the damage they’ve caused.
They are concerned only for themselves.

POWER CORRUPTS.  ABSOLUTE POWER CORRUPTS ABSOLUTELY!
TIME FOR THE POWER OF THE PSYCHIATRIC CABAL TO END.  IT’S ABSOLUTELY TIME!!

Meanwhile, here in Ireland …..

Back in early April, the NICE guidelines (which were taken from the NHS) were removed from our HSE website.  WIN!!
In fact, everything to do with M.E. (and with CFS) was removed.
Our HSE (@HSELive) has been given the information necessary to input the correct information and guidelines on its website.

The @Hope4MEFibroNI conference took place in May and was attended by a representative of the HSE.  She was very impressed and learned so much, in particular with regard to our not being able to make sufficient energy.  She hopes to submit her report soon and I have furnished her with more information which she will pass on to the relevant section of the HSE.  (I wonder what section that is??)
Huge thanks to Hope 4 ME & Fibro NI for their generosity and hospitality.

Hopefully, when they have digested the correct information given to them, the HSE will update its website with the exact and correct guidelines and information.

The Invest In ME (@Invest_in_ME) conference also took place in May and we are awaiting a report from them as our Minister for Health, @SimonHarrisTD, has said his department would be interested in the outcome of the conference.

Living With M.E. Series …. a 17 year old boy who is living with M.E. for the past 5 years

Most days I have literally no energy to do anything but breathe.”


“That’s about it really. I don’t do anything else. I cant.”

With May being International M.E. Awareness Month and with the #MillionsMissing campaign taking flight, it is the hope that we can bring the lived experiences of people with M.E. to the fore, in an effort to highlight the illness, the symptoms, the lack of care, the neglect, the isolation, the lack of knowledge, the utter effort it takes to get through a day.
Just think about it.  As parents we worry about our children when they get a cold or a ‘flu.  We worry about their safety when out of our sight, we worry about their homework being done, their next exam, their school grades, their hobbies, their interests, the amount of time spent in front of a TV, etc. etc.  So many things to worry about ….

For this family, the worry is completely different and overwhelming and never-ending!  We get an insight into what they have to deal with – day in, day out.
This is why we MUST get the help needed for people with M.E.  We HAVE to ensure that our government and the @HSELive take responsibility for the health of M.E. patients and provide the necessary care and treatment.  It needs to happen NOW.

The time for ignoring such seriously-ill patients is over.

This is the first guest blog post on Living With M.E.  I am delighted and grateful that this young man has been brave enough to give his insight into this world.
My hope is that the world for M.E. patients improves in the very near future so that he, and the other children like him, have a future – a future with the normal worries for him and for his parent.

“A Day In The Life Of A 17 year old Boy With M.E.”

I have been ill since the age of 12 years. I’ve now just turned 17. I live

with my Mam and there is just the two of us.

In 2012 I contracted a virus from which I never recovered. I had just

started secondary school and a few weeks into it I collapsed at school

and have been ill since. I felt like I had the flu every day and I had

little or no energy. I had a headache all the time. I regularly vomited –

sometimes for weeks at a time it wouldn’t stop. Everything I ate

would just come back up. I had terrible all over pain and muscle

spasms.

I spent a lot of that first year in and out of hospital as I just kept

getting worse and worse. Eventually I was diagnosed with Post Viral

Illness/CFS. Eighteen months later I saw an international UK

Paediatric M.E. specialist and he confirmed a diagnosis of Myalgic

Encephalomyelitis.

I have so many symptoms, its hard to keep track of them. I have

difficulty processing information and have poor concentration. My

short term memory is very bad. My eyesight has deteriorated and

sometimes I cant focus at all as everything is blurry. Some days I find

it very hard to even speak. I don’t always have enough energy to

communicate.

I have terrible gastrointestinal problems which I don’t want to go

into here except to say that I vomit all the time and am very limited

in the foods I can eat. I have chronic bone and muscle pain. I get very

painful muscle spasms and when this happens I often cant walk for

days afterwards.

Most days I have literally no energy to do anything but breathe.

So this brings me to describe what a typical day for me is like.

Typical Day

At the moment I am waking up about 9pm. I haven’t been able to

sleep at night since I became ill so I sleep during the day.

The first thing I am aware of is pain and nausea. My bones are so

painful that sometimes I can’t get up straight away to go to the

toilet, unless I get some help. Most days my head hurts a lot too.

On my worst days I cannot move out of bed, I can’t eat, can’t sit up,

the room must be in complete darkness because otherwise it will

hurt my eyes and make me feel sick. Any noise causes pain and

concentration problems. I sometimes wear ear defenders to block

out any noise. In addition some noises will set off my constant

tinnitus to a high level and makes everything unbearable.

I am unable to eat anything for several hours after waking because of

the nausea. On the days when my stomach is very bad, I have to eat

very plain foods as there is a better chance of it staying down or at

least it stops me vomiting as much.

On other days when I am more able to move it can take me a long

time to get out of bed. This is because of the chronic pain I am in.

Most days I find the stairs very, very difficult to negotiate. I try to

base my whole day around only going up and down the stairs once as

the pain in my muscles and joints is excruciating. Some days I don’t

manage the stairs at all.

I spend all of my time in my room with the curtains pulled tight. I

never use a light in my room as it would just hurt my eyes.

On good days I can spend some time on my computer. I like to learn

new things and I try to learn as much as I can via the internet. I love

watching documentaries too.

Sometimes I make plans to have a shower or brush my teeth or

shave. Most days those plans come to nothing though as I don’t

often have the energy to do any of those things. Taking a shower

would wipe me out totally and I absolutely couldn’t even think of

having a shower on my bad days. I brush my teeth in my room with a

glass of water if I cant do them in the bathroom.

I overheat all the time as well so my room is like a fridge, according

to my Mam anyway! The window is always open and the fan is

always on. I just feel like I am boiling up inside. Funny thing is every

now and then I can switch from feeling boiling to feeling freezing and

it makes to difference what the room temperature is. Even if it was

hot in the room I can still feel freezing or vice versa.

I dread hospital appointments as Im often too ill to attend them and

they take huge amounts of energy that I don’t have. When I know I

have an appointment coming up I worry about it for ages beforehand

because I worry that I cant make it.

That’s about it really. I don’t do anything else. I cant.

M.E. becomes visible in Ireland #MillionsMissingDublin

M.E. becomes visible in Ireland #MillionsMissingDublin

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M.E. becomes VISIBLE for the first time in Ireland

For the first time in the Republic of Ireland, M.E. (Myalgic Encephalomyelitis) will become visible.  It is part of a global campaign called #MillionsMissing to highlight the illness and the neglect of patients.

The demonstration by M.E. patients, their families/carers is taking place outside the Dáil on Thursday, May 11th from 11am to 3pm.

For any patient unable to attend, a pair of empty shoes will be placed on the ground symbolising what they are missing because of M.E.
Examples would be:
My name is ______, I have M.E. for ____ years.  I am missing out on life with my family, missing my education, missing my children, missing out on a social life – whatever is applicable to each person.
So, the empty pair of shoes is quite an emotive and symbolic gesture.

We need all the support we can get.  If you can join us, please do.

Thanks to Corina Duyn for this fabulous poster:
Corina's #MillionsMissing Cover Photo.png

How to take part:

There are numerous ways in which to take part in the demonstration, both in reality and virtually 🙂

  • Come along to the Dáil on the day – we do need numbers.
  • If you have M.E., you can write to/email your TDs, asking them if they would come out to speak with us on the day.  A template of the letter can be supplied if you’d like.
  • If you have M.E., you can send a pair of shoes (as outlined above) with details.  I can let you have the postal address privately.  If you cannot manage to send shoes, you can let me have your details and they will be put on an empty pair of shoes for you.
  • If you have M.E., you can send a photo to Moira Dillon, who has set up the fabulous Instagram page.  Moira will “scratch” out the M.E. patient from the photo.  Give a follow to MillionsMissingDublin Instagram here:  https://www.instagram.com/millionsmissingdublin                                                Contact Moira here: https://www.facebook.com/moira.dillon.5?fref=ts
  • SHARE all the information/posts that you can, using the hashtags #MillionsMissing #MillionsMissingDublin and #ME on Social Media
  • On Twitter, use the same #hashtags and follow @MMDublin.  ReTweet any tweets that you can.
  •  For the month of May,  a #MillionsMissing filter Twibbon can be added to your Social Medial profile picture.
    https://twibbon.com/support/millionsmissing-4

It has taken a huge effort on the part of many people, the majority of them patients, to get this demonstration underway.

 

What is M.E.?

M.E. is a neurological illness, as defined by the WHO (World Health Organisation).  It is a complex, acquired illness affecting multiple systems and organs, including CNS (Central Nervous System), immune system, gastrointestinal, musculoskeletal, cardiac, etc.  It normally starts with a viral infection.
An M.E. patient’s body loses the ability to produce sufficient energy at the cellular level.
Of course, the body needs energy for all its functions.  Without this energy/power, our bodies will not grow, cannot perform the necessary tasks such as regulating heart rate, blood pressure and is needed for reproduction, growth, immune defence, cognitive function, reparation, balance, etc.

There are four levels of severity: Mild, Moderate, Severe and Very Severe.
A Mild M.E. patient can generally cope fairly well with life by learning to ‘manage’ the illness.

A Very Severe M.E. patient lives in a bed, in a darkened and silent room, unable to tolerate light, sound, touch, smell and may be tube-fed, if he/she is unable to swallow.

A patient can go from one level to another over his/her lifetime.  It may not be a static illness.  Sadly, some live in a Very Severe state for years on end.

 

Here are just SOME of the symptoms that M.E. patients live with every day:
M.E. Definition & List of Symptoms.png

In Ireland, M.E. is ignored and neglected

Here in Ireland, M.E. is not taught in Medical Schools.  Therefore, the first time a GP has to deal with it is when an M.E. patient presents at his surgery.   A referral to a neurologist yields nothing but frustration as a neurologist doesn’t know about M.E. either!  There is no M.E. specialist/consultant in this country.

Healthcare personnel, be they acute or community, are not equipped to deal with M.E. patients and their needs, as they are not taught about it either.

Ireland does not adhere to the WHO classification of M.E., even though it signed up to it.  Ireland has allowed M.E. to become conflated with “CFS” (a waste-basket diagnosis for fatigued patients or patients with fatigue as their primary symptom) and therefore Ireland is in violation of the WHO code.

Up until recently, the HSE had dangerous guidelines on its website.  Thankfully, they have been removed.  We need to ensure that correct diagnosis and guidelines are set.

To reiterate, we need all the support we can get.  If you can join us on May 11th outside the Dáil, please do.

 

 

Thursday 20th May 2017