M.E. History: United Kingdom, Attempt to pass a bill on myalgic encephalomyelitis into law, 1988

This was originally posted by @Cinders66 here

On 23rd February 1988, Scottish MP Jimmy Hood tried to introduce a Bill in to the UK parliament "to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis."

Details of this initial attempt can be found here, http://hansard.millbanksystems.com/commons/1988/feb/23/myalgic-encephalomyelitis

This bill was supported by MPs, Mr. Alfred Morris, Mr. Jack Ashley, Mr. Brynmor John, Mr. Don Dixon, Mr. Alan Meale, Dr. Lewis Moonie, Mr. Sam Galbraith, Ms. Harriet Harman, Mr. Jimmy Wray, Mr. Tom Clarke and Mr. Jerry Hayes.

On the 15th April 1988 this bill was due to have its second reading, unnamed MPs objected and it was deferred to 22nd April 1988, http://hansard.millbanksystems.com/commons/1988/apr/15/myalgic-encephalomyelitis-bill#column_519

22nd April the second reading was attempted again, again it was objected to and deferred until 13th May 1988, http://hansard.millbanksystems.com/commons/1988/apr/22/myalgic-encephalomyelitis-bill#column_1168

13th May 1988, second reading attempted and objected to, deferred until 8th July 1988, http://hansard.millbanksystems.com/commons/1988/may/13/myalgic-encephalomyelitis-bill#column_652

8th July 1988, objected to again, deferred until 28th October 1988, http://hansard.millbanksystems.com/commons/1988/jul/08/myalgic-encephalomyelitis-bill#column_1372

28th October 1988, no reference to it the Commons records, presumably no further attempt to move it forward is made, http://hansard.millbanksystems.com/sittings/1988/oct/28

I thought that it could be useful to have this laid out in a clear manner in a separate thread, so here we are.

 

Thank you @Cinders66 and @Andy.

 

Wherever I read about this I had seen the following:

The ME Sufferers Bill was presented to the House of Commons by Jimmy Hood MP on 23rd February 1988 and passed its first reading unopposed. The second reading was on 15th April 1988 and the Bill was ordered to be brought in and to be printed (Bill 99). The Bill required an annual report to Parliament: “It shall be the duty of the Secretary of State (for Health) in every year to lay before each House of Parliament a report on the progress that has been made in investigating the causes, effects, incidence and treatment of the illness known as ME”

 

Do you have a link to the original source for that information?

 

I am looking. I have found another reference which is not quite the same. This one is from "Time for a Reality Check at the UK Department of Health?" by Margaret Williams :

The ME Sufferers’ Bill was presented to the House of Commons by Jimmy Hood MP on 23rd February 1988 and passed its first reading unopposed. The second reading was on 15th April 1988. The Bill asked for an annual report to Parliament: “It shall be the duty of the Secretary of State (for Health) in every year to lay before each House of Parliament a report on the progress that has been made in investigating the causes, effects, incidence and treatment of the illness known as ME”. Hansard (House of Commons) for 23rd February 1988 at columns 167-168 records “There is no doubt that ME is an organic disorder. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair”.​

Also accompanied straight after by this:

In one of her published diatribes on ME sufferers, journalist Caroline Richmond (the founder of HealthWatch), stated: “Myalgic encephalomyelitis is the first and indeed the only disease legally recognised in Britain, thanks to a private member’s Bill passed in 1988” (Myalgic Encephalomyelitis, Princess Aurora, and the wandering womb. BMJ 1989:298:1295-1296).
​

It is also referenced in the Gibson Enquiry report on page 10 which I have attached (I can't attach the first one as wrong file extension):

2.2 ME Sufferers Bill 1988
In the course of our investigations, we were made aware of research that has
been done internationally. In Britain, there has been a clear historical bias
towards research into the psychosocial explanations of CFS/ME. This is despite
Parliament recognising ME as a physical illness in a Private Members Bill, the ME
Sufferers Bill, in 1988.
​

I haven't found the exact quote yet but will have another search later. Hopefully these two will be good enough though.

I have already written to my MP asking why there are no reports. Although if the Bill wasn't passed then that would be the reason! I would have thought that the Gibson report was quite accurate though.

 

Have found this page which shows, as far as I can see, that there was no relevant act passed in 1988, https://www.legislation.gov.uk/ukpga/1988?page=1

More so that I understand the process, this page, http://www.parliament.uk/business/bills-and-legislation/, states

So if it had been passed into law the Bill would have become an Act that would be listed on the legislation site. (I think, assuming I understand everything correctly.)

 

There is another reference in 1991:

MYALGIC ENCEPHALOMYELITIS
HC Deb 13 March 1991 vol 187 c955955
§Mr. Jimmy Hood, supported by Mr. Alan Meale, Mr. Don Dixon, Mr. Martin Redmond, Mr. Jerry Hayes, Mrs. Margaret Ewing, Mr. James Wallace, Mr. John McAllion, Mr. Ian McCartney, Mr. Frank Haynes, Mr. Thomas Graham and Mr. Jimmy Wray, presented a Bill to make provision for an annual report to Parliament on matters relating to myalgic encephalomyelitis, including progress made in investigating the causes, effects and treatment of the disease, diagnostic practice and information derived from national epidemiological surveys: And the same was read the First time; and ordered to be read a Second time on Friday 19 April and to be printed. [Bill 110.]

​

 

I think this is where I got the first quote from http://www.investinme.org/Article-704 UK-Government Position on ME.htm

It also says :

Hansard (House of Commons) for 23rd February 1988
at columns 167-168: “There is no doubt that ME is an organic disorder. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair”.

The short title, extent and commencement states:

“This Act may be cited as ‘The Myalgic Encephalomyelitis Sufferers’ Act 1988. This Act extends to Northern Ireland. This Act shall come into force on 1st January 1989”.
​

I cant find that in hansard though. Maybe needs an email to parliament people to ask them. I do have a question in to my MP though and she has sent it to Jeremy Hunt so hopefully get a reply soon and that may tell us.

 

Perhaps it got lost in the Scottish and Welsh devolution legislation - health is devolved ?

 

Thanks @Sbag for your efforts to find it. It looks odd to say the least, from what I can see I can only assume currently that Margaret Williams has misunderstood in some way what actually happened. Even Googling "The Myalgic Encephalomyelitis Sufferers Act 1988" only returns two hits, the Invest in ME link you give above and Margaret's site, when if it had been passed into law we should be able to expect there would be far more (I've also tried different variations based on “This Act may be cited as ‘The Myalgic Encephalomyelitis Sufferers’ Act 1988. This Act extends to Northern Ireland. This Act shall come into force on 1st January 1989”, it didn't help.).

 

Unfortunately the online Hansard House of Commons archives only go back to Nov 1988:

http://www.parliament.uk/business/publications/hansard/commons/



Edit: But about to look at Historic Hansard.

 

Lots of kicking the can down the road, despite Jimmy Hood's best efforts:

http://hansard.millbanksystems.com/sittings/1988/feb/23

http://hansard.millbanksystems.com/commons/1988/feb/23/myalgic-encephalomyelitis

http://hansard.millbanksystems.com/commons/1988/feb/23/myalgic-encephalomyelitis-1

http://hansard.millbanksystems.com/commons/1988/apr/15/myalgic-encephalomyelitis-bill

http://hansard.millbanksystems.com/commons/1988/apr/22/myalgic-encephalomyelitis-bill

http://hansard.millbanksystems.com/commons/1988/may/13/myalgic-encephalomyelitis-bill

http://hansard.millbanksystems.com/commons/1988/jul/08/myalgic-encephalomyelitis-bill

Until the can seems to disappear on 28 Oct 1988:

http://hansard.millbanksystems.com/sittings/1988/oct/28

 

That was 1998, so in 1988 it was all still in Westminster.

 

it's weird there is the other one from 1991 as well though.

Best wait and see what Mr Hunt says!

 

Lol, thanks for the work there Barry but you've just duplicated my original post, https://www.s4me.info/threads/m-e-h...myalgic-encephalomyelitis-into-law-1988.2598/

 

It's good to have such stalwarts who put the work in even if it's duplicated
(Well done to both @Andy and @Barry)

Unfortunately Jimmy Hood died in December last year so we can't ask him about it
https://en.wikipedia.org/wiki/Jimmy_Hood

edit - added capital letter to name

 

Oh ... sh*t!

 

It would be interesting to know what the parliamentary mechanism is for a bill the be withdrawn (if that is what happened), and if a record of that would be anywhere. I get the feeling there were probably some powerful forces in the background obstructing Jimmy Hood's valiant efforts, and may well have completely snuffed his efforts out.

 

Looks like this was a second attempt to get it introduced (which reinforces the view that it failed in 1988) on the 13th March 1991. It was meant to be read for a second time on the 19th April but there is no mention of it. There is a mention of it though on the 26th April where it is deferred to the 3rd May, where it is deferred to the 10th May. It only actually reappears on the 5th July, where it is deferred to the 12th July, at which point I can't see any further mention of it.

 

From Wikipedia

https://en.wikipedia.org/wiki/Private_member's_bill#United_Kingdom