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:

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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…

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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”

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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.