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.

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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

 

 

 

 

 

 

 

 

 

 

 

GOOD NEWS UPDATE to both blogs: The HSE is Responsible to its Irish Citizens for dangerous information on its website – M.E. Myalgic Encephalomyelitis

Link to 1st blog: The HSE is Responsible to its Irish Citizens for dangerous information on its website – M.E. Myalgic Encephalomyelitis: https://wordpress.com/post/butformeblog.wordpress.com/394
Link to 2nd blog: The HSE is Responsible to its Irish Citizens for dangerous information on its website – M.E. Myalgic Encephalomyelitis Part 2:
https://wordpress.com/post/butformeblog.wordpress.com/453

UPDATE

Delighted to say that the @HSELive has removed all information relating to M.E. (Myalgic Encephalomyelitis) and to CFS (Chronic Fatigue Syndrome) from its website.  I couldn’t be happier to see this dangerous and ill-informed information gone.

They are reviewing the content and will republish when the review is finished.

Would love to know WHO is/are reviewing it??  That is the big question.

But it’s a big step and progress in the right direction.
Thanks also to a guy called A. Burn who was in contact with Minister @SimonHarrisTD, Minister for Health and another T.D. in his area.

 

The HSE is Responsible to its Irish Citizens for dangerous information on its website – M.E. Myalgic Encephalomyelitis Part 2

#HSE digital@hse.ie @SimonHarrisTD @HSElive #ME #MyalgicEncephalomyelitis

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Link to previous blog:

https://butformeblog.wordpress.com/2016/09/24/the-hse-is-responsible-to-its-irish-citizens-for-dangerous-information-on-its-website-m-e-myalgic-encephalomyelitis/

Steps when dealing with the HSE:

1)  Count to 10
2)  Count to 10 again
3)  Repeat steps 1 and 2
4)  Repeat step 3

As you probably surmised, nothing has changed on the HSE website, despite numerous calls to its office.

19th October 2016

Phoned HSE again and was told this had been “escalated to a group responsible for the A-Z” and discussed at a team meeting. The guy with whom I spoke mentioned somebody he thinks works in “Clinical Programmes” and they were trying to send it on to a professional.

I explained simply about the two very necessary things that should be done when a study or trial (PACE trial) is released – at the very least, 1) Conflicts of Interests and 2) who funds (or partially funds) the trial. He seemed quite appalled when I told him about those aspects of the PACE trial.  Needless to say, I added that we’re an intelligent people and, if we’re not going to do our own research and simply take stuff from other countries’ health services websites, the least that should be done is to check the accuracy of it.  He agreed but added that they assume it to be correct.

So …. I said, that’s where I have the problem.  That they ***assumed*** that THAT was correct but yet I had given them all the ***proof*** they need and they’re still trying to verify that.  But he was extremely nice and understanding.

He himself works on the ‘backend’ of the website, said there are over 123,000 files, with some that are out of date and potentially incorrect and that the website needs to be amended.

He added that they intend to put a Feedback feature at the bottom of the website soon and also surveys. So, that’s good.

He took my mobile number and will get back to me today or tomorrow when he gets to speak with somebody about it.

So, I felt a little bit of optimism!

20th October 2016

He phoned and said he’d love to change it, has the ability as he works the back-end but doesn’t have the authority.

He spoke with somebody who will send a formal request through to “Clinical Programmes” outlining the importance of this.  That section deals with neurology & chronic disease. He did say it’s a “long-winded & convoluted” process.

Sadly he said it probably would be the case that they will not be separated (M.E. and CFS) but that something would be added instead. In fairness he is trying, even though it’s not his field.

He said they would send both of my emails with the links I had sent to them.  I also mentioned that the AHRQ (Agency for Healthcare Research and Quality) had downgraded CBT & GET, that I had forgotten to put that in my email but that it’s on Twitter when I tagged @HSELive.

While I was speaking to him, I asked about the response from them on Twitter on September 27th 2016 (posted in my last blog but shown again below) as HSE had said “clinical colleagues”. Since we have no ME experts here, who would be able to help with this? He said “I know”! But said there is a team.

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3rd January 2017

Phoned HSE again.  Lady with whom I normally speak was not in the office today.  The person who answered knew about my query, said it was being looked into,  took my mobile number and will phone me back.

 

9th February 2017

Phoned HSE again.  Both ladies who had been dealing with me were at meetings.  They will phone me back.

10th February 2017

Phoned them again today.   The lady said they had a good long chat about it yesterday, that it’s the Clinical Programme Section that’s in charge of content. I said I was told by HSE on Twitter that its clinical colleagues will look into it and asked who they were and how would they know about M.E. since it’s not taught in Medical Schools here. She understood.  I apologised for being a pest, as I’ve been phoning & emailing them since June 14th last.  She said no, it’s good that I have been doing that as all of the calls are logged.

She said the website is being totally overhauled but that she (or her section) can’t change what’s on the website with regard to M.E. She added that she will give the Clinical Programme Section my mobile number and ask them to call me.  I thanked her, adding that if I don’t hear from them, that I will be calling her again lol  She said that’s no problem at all and, at that stage, she will then give me the phone number for that section and a name to contact there

 

22nd March 2017

Phoned again & spoke with the same lady.  She said the guy I had previously spoken with is revamping the whole of the A-Z.  He’s not there at the moment.  She’ll contact him & get him to phone me back. She doesn’t know if he is hitting a brick wall with it or what the story is.  So she’ll get him to phone me.

She apologised that I had to phone again.  I told her that May was International ME Awareness Month and that I’d like to be able to tell M.E. patients that at least the HSE in Ireland has taken that crap off their website.

28th March 2017

Phoned HSE again.  The same lady with whom I had been speaking had just found out that the section they had been looking to about this matter is not the correct section to make a decision on this and they’re trying to find out what section is!
To say I was fuming is an understatement.

I asked how could anybody or any section in the HSE even know about it since it’s not even taught in Medical School.?

I referred her to the HSE tweet response I got on Twitter back in September where they said they’d contact their ‘clinical colleagues’ and revert to me. She said she didn’t know who those clinical colleagues would be.

She was very apologetic and said she was so sorry.  Ah sure, it’s not her fault.  (Isn’t that the big problem here though?  Who’s fault and responsibility is it??)

But, as I said to her, I am now more than 9 months emailing, but in particular phoning, them and this is what it has led to – nothing!

I also told her that in the U.K. I’d imagine there will be lawsuits as quite a number of people have died as a result of those dangerous guidelines or been left bedridden and that I hope the same happens here, i.e. if somebody has died/been made seriously worse.
I emphasised that the M.E. community here will pull together and fund such a lawsuit!!

I told her: “The bottom line is the buck stops with @SimonHarrisTD.  He’s the Minister for Health“.
She said she will continue to find out what section deals with it and, if she does, she will phone me.

I then phoned Minister Harris’ office

I spoke with Minister Harris’ admin Stephen.  I explained all (again).  I also mentioned that one of Minister Harris’ constituents visited his office back in November and explained all about M.E. to him.  So I said I know Minister Harris is perfectly aware of M.E. and all the neglect they are perpetrating.  He said he can pass on my message to Minister Harris.  I asked if I could get a reply and was told that I would need to write for that to happen.  I said I’m blue in the face writing to Ministers for Health and that I have a load of emails from ministers, all circular, as nobody seems to think logically.  Again I mentioned about lawsuits, emphasising the seriousness of the dangerous information they are promoting.

I said that, to my knowledge, Ireland signed up to the WHO (World Health Organisation). 
He said he didn’t know as he’s just an admin.  So I said then perhaps he would ask Minister Harris that and ask him if, as such, we’re supposed to follow their rulings/classifications as M.E. is classed as a neurological illness by the WHO.
I gave him my mobile number.  Might as well be an optimist!

SO 9 MONTHS FROM FIRST CONTACTING THE HSE ABOUT THEIR DANGEROUS INFORMATION ON ITS WEBSITE AND SUPPLYING THEM WITH PROOF OF THIS, ALONG WITH THE CORRECT INFORMATION, I FIND OUT THAT NOBODY KNOWS WHO/WHAT SECTION DEALS WITH THIS.  ALL OF THAT TIME AND ENERGY!

IS IT ANY WONDER THIS COUNTRY IS IN THE STATE IT IS IN?!!

From March 28th to March 31st inclusive, my emails were opened 58 times by digital@hse.ie

Considering the level of disability suffered by M.E. patients and that it has been shown that M.E. (sometimes called ME/CFS in the U.S.) has the Lowest Quality of Life (QoL), this is totally unacceptable.  Take a look at the chart:

Screen Shot 2017-04-01 at 12.57.41.png

 

 

 

 

 

 

PACE part II? Esther Crawley and FITNET

Excellent. Thank you.

Utting-Wolff Spouts

In case you missed it, unlikely but kudos if so, today (1 November) has seen considerable media coverage of the proposed FITNET trial[1] (of course the acronym has to include the word ‘fit’) being run by Professor Esther Crawley. Costing £1 million, we yet again see large sums of money being spent on studies promoting the biopsychosocial (BPS) model of the disease rather than decent biomedical research. Crawley’s trial draws on a Dutch study which showed no difference between treatment cohorts at long term follow up[2], though the BBC and their scientifically illiterate journalists imaginatively and dishonestly spun this as a 2/3rd cure rate. Again the laziness and uncritical reporting of any story concerning ME, promoted as usual by the Science Media Centre (SMC), by the UK media is glaring. They even dragged out their old canard, supposed victimisation of the brave researcher (that would be Crawley) by nasty ME activists, said researcher ‘heroically’ carrying on despite abuse from a minority of patients. Such claims were conclusively debunked by the recent First-Tier tribunal…

View original post 753 more words

The HSE is Responsible to its Irish Citizens for dangerous information on its website – M.E. Myalgic Encephalomyelitis

The HSE is Responsible to its Irish Citizens for dangerous information on its website – M.E. Myalgic Encephalomyelitis

#HSE digital@hse.ie @SimonHarrisTD @HSElive

June 14th 2016
I phoned the HSE regarding information on M.E. on its website.   The lovely lady with whom I spoke was surprised that clicking on ‘Myalgic Encephalomyelitis” brought the searcher to “Chronic Fatigue Syndrome”.  I explained that the advice given there was ill-informed and dangerous.  She said she would pass on the information I gave her to the relevant person(s) and I said I would email details, which I did that day.

I asked for a reply.

The email was opened.
I heard nothing back.

 

July 14th
I phoned again.  The lady with whom I had previously spoken was not in the office but I was told she would be informed that I phoned and hopefully would contact me the following week.  I gave my mobile number.

I heard nothing back.

 

September 23rd
I emailed the HSE again (cc’d a helpful TD), giving more detailed information including the PACE trial outcome.  [I also stated that there may well be repercussions in the United Kingdom and elsewhere from the fallout of this fraudulent PACE trial.]

I asked for a reply (as I did not receive one from my previous email).

The email was opened at least 5 times by digital@hse.ie that same day.

 

If I do not receive a reasonable response from digital@hse.ie, the HSE or the Health Minister within the next week, I will publish both emails online.

We cannot risk any more M.E. patients making their illness worse by following dangerous advice from our government.  The HSE, which is responsible for guidelines, cannot say it was not informed.
(Not that it is a patient’s responsibility to inform our Health Service Executive about any medical condition.)

Bottom Line: The #HSE is responsible for the advice given to Irish citizens.

 

 

UPDATE:

 

On Tuesday, 27th September, the HSE () responded on Twitter as follows:
“We’re following this up with clinical colleagues to verify the information.  We’ll be in touch”

Screen Shot 2016-09-27 at 14.05.05.png

Very pleased that the HSE has responded and that they said they will look into it.  I presume the ‘clinical colleagues’ are the people who are responsible for the information on the HSE website.
I don’t know how long they expect the verification to take, nor did they give any idea.  However, I’ve offered to help with the verification as has another member of the M.E. community.  There is no problem with verifying the information.

I wish to state that they can not take an unreasonable amount of time as this has to be done as soon as possible.  All of the verification they need is available online and should only take a maximum of one day.  So I will see how it goes for now but will ‘up’ the campaign if they appear to be hesitating.

However, I’m extremely pleased that the HSE has responded in this matter and thank them.