Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

[Countrygirl]

Gulf war syndrome etc?.....or maybe we are genetically engineered soldiers that didn't work out?

I was referring to the spraying of bacteria by Porton Down of the West coast of England and the overnight spraying of the south west during the Cold War. The same procedure was repeated over parts of the US. The people of Lulworth cove in Dorset were especially affected by spaying from ships at sea and a number of their children were born with deformities which they claimed were a result of the contamination.

 

[dangermouse]

Can't someone throw them a stick or something?

That'd be fantastic!!

 

[slysaint]

Well, @TiredSam ! ......they are .......foreign.....................................as in................not English ..............you can't expect NICE to take notice of...............foreign.............research..............let alone ......foreign......opinion.

And yet they are quite happy to cite a lot of research done on 'chronic fatigue' in the Netherlands?
There are 8 papers with Knoop as an author in the surveillance proposal.
http://psychologymedicine.nl/our-people/projectleaders/dr-hans-knoop/

"Expertise
For most people, fatigue is a ‘normal’ and sometimes pleasant state that is experienced regularly. However, fatigue can become a symptom when it is severe, chronic, and interfering with daily live. Chronic fatigue can be the result of a chronic illness, but when a somatic explanation is lacking, we sometimes speak of chronic fatigue syndrome (CFS)."

Is this one of their 'experts'?

 

[arewenearlythereyet]

I was referring to the spraying of bacteria by Porton Down of the West coast of England and the overnight spraying of the south west during the Cold War. The same procedure was repeated over parts of the US. The people of Lulworth cove in Dorset were especially affected by spaying from ships at sea and a number of their children were born with deformities which they claimed were a result of the contamination.

That sounds more sensible. lulworth cove is lovely ....went there for a geology field trip for my o level...amazing strata.

 

[arewenearlythereyet]

I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of patient dissatisfaction can be ignored by NICE

The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

Interesting to note some of the names on the NICE stakeholder list:

British Medical Journal
Cochrane centre for depresion, anxiety and neurosis
Eli Lilly (drug company)
Ministry of Defence
Royal College of Psychiatrists

Full list of ME/CFS stakeholders in the ME/CFS guideline here:
https://www.nice.org.uk/guidance/cg53/documents/stakeholder-list-2

Dr Charles Shepherd
Hon Medical Adviser, MEA

Quite an enormous amount of alternative therapy organisations ...what is psychodrama? Seems apt?

 

[Barry53]

Yeeah !!!

 

[Tom Kindlon]

Goes without saying but those on FB and Twitter please share.
@Kina is there a way to get this 'shouted out' to all members?

@Tom Kindlon can you help spread this; thanks in advance.
@Keith Geraghty ditto.

Done

 

[Skycloud]

Gulf war syndrome etc?.....or maybe we are genetically engineered soldiers that didn't work out?

I was hoping I'm a weapon of mass destruction

 

[dangermouse]

I wonder if they even looked at the infamous GETSETJULIE diary? They can't have...can they?

 

[Skycloud]

Wow, just read the list of stakeholders. Would love to see the submissions from some of them.

( 'love' is probably a poor choice of word)

 

[charles shepherd]

I was referring to the spraying of bacteria by Porton Down of the West coast of England and the overnight spraying of the south west during the Cold War. The same procedure was repeated over parts of the US. The people of Lulworth cove in Dorset were especially affected by spaying from ships at sea and a number of their children were born with deformities which they claimed were a result of the contamination.

MoD interest in ME/CFS may also relate to the fact that:

1 The medics at the MoD are obviously very interested in Gulf War Syndrome and there is quite a lot of overlap between GWS and ME/CFS

2 The MoD has a number of people from the armed forces who have developed ME/CFS - I have been involved with several cases over the past few years

CS

 

[slysaint]

MoD are obviously very interested in Gulf War Syndrome

Unfortunately this is Simon Wessely 'territory' and judging from a talk he gave, about his 'epidemiology studies', according to him it also 'doesn't exist'.

But meanwhile in the US:
https://www.sciencedaily.com/releases/2017/02/170227152205.htm
""A major research interest of mine is how the brain and the immune system function and malfunction in health and disease," said Filipov, who also studies Parkinson's and other neurological diseases with ties to environmental contaminants. "There's increasing evidence that the immune system is dysfunctional in the veterans with Gulf War illness, and perhaps neuroinflammation plays an important part in the manifestations of the disease."

 

[charles shepherd]

9328 signatures this morning - can we break through the 10,000 barrier by the end of today?

CS

 

[Countrygirl]

9 500!!!!!

 

[charles shepherd]

9796 signatures at the start of Friday afternoon

Later this afternoon it looks as though someone will be the 10,000th person to sign this petition!

CS

 

[MeSci]

9796 signatures at the start of Friday afternoon

Later this afternoon it looks as though someone will be the 10,000th person to sign this petition!

CS

I'm sure the British government will complain that the petition is international and thus non-representative.

9845 now anyway.

 

[Countrygirl]

9 865!................................

 

[MeSci]

Nearly there - 9,966.

 

[NelliePledge]

ooooh just 10 to go

 

[Countrygirl]

10 000!!!!!