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

Screen Shot 2017-07-13 at 08.46.11.png

Screen Shot 2017-07-13 at 08.46.52.png

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.


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.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s