How to follow up on the Carol Monaghan debate in Westminster

Esther12 said:
What does anyone think about trying to use this to apply political pressure on Cochrane to properly engage with the concerns raised about the quality of their work?

eg the very weak responses Larun gave to Courtney's comments: https://sites.google.com/site/mecfs...exercise-therapy-for-chronic-fatigue-syndrome

Could this backfire? I don't know whether challenging Cochrane to do a better job in this way could do more harm than good. If we were to encourage this, we would need to do so very carefully, and make sure that any MP involved was being briefed by people who had a good understanding of all the details.
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I think political pressure to take the issues seriously is a good idea. If I remember they had no justification for dismissing Courtney's comments which included pointing out their own outcome switching.

I think we need to be careful about the nature of the pressure. Basically they have done poor work and dismissed issues out of hand rather than dealing with them. It suggests weak governance from Cochrane and I think puts all their work in doubt and certainly should put their status as a trusted source in doubt. I think the NHS consider them as a trusted source so maybe pressure that way.

Even if a challenge lead to them reviewing what they have said and was enough for them to know they are being observed and hence can't just do what is convenient for them.

Was their editor (Tovey) friends with Wessely (I think Max on twitter found some association).
 
Russell Fleming said:
Well the transcript shows a good number of MPs, but I had a feeling I read a list of who attended here on Science4ME. Maybe on the original thread? Surprised there isn't an official record actually. Dr Shepherd may know, but I doubt he would have recognised every one of the MPs round the table.

And further to my last comment, I just remembered Forward ME has a meeting on 28th February, so I would image this debate and future actions will be on the agenda. They are also meeting with one of the heads of Capita - the disability benefits assessment people - which might be opportune...
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Thanks for keeping us posted @Russell Fleming
 
I'm not sure if this has already been posted but found this FOI with regards to the DWP involvement (which I will send to CM):
"
Dear D Benyon

Thank you for your Freedom of Information request received on 2 March
2011. You asked:

'Dear Department for Work and Pensions,
Please could you explain why this department was involved in part
funding the recent PACE trial into the use of CBT & GET on ME/CFS
sufferers?
How many other studies, with regard to particular illness' has the
DWP been involved in with funding prior to this?
If this is the first study that the DWP has helped to fund, why
this trial?
Has the DWP a particular agenda with regard to ME/CFS such as
disregarding the WHO classification of it being a NEUROLOGICAL
disease?'"

"
I have answered each of your questions in turn:
Please could you explain why this department was involved in part funding the recent PACE trial into the use of CBT & GET on ME/CFS sufferers?

If this is the first study that the DWP has helped to fund, why this trial?

The funding was agreed by a previous Departmental Chief Medical Adviser,
who supported PACE due to his combined expertise and academic interest
in this area of work. In his role as Chief Medical Adviser he felt it reasonable to support this trial, particularly as when the trial was initially being developed, consideration was given to exploring the use of a five point measure of work and social adjustment, which would look
at employment and social outcomes for people taking part in the trial.

Additionally, one of the secondary measures considered as part of the trial, was the impact that the trial would have on ability for employment and study.

We believe that the findings of the trial will contribute to the continuingly growing evidence base, which informs the development of health and work related policy, policy based on the large body of
evidence showing that work is good for physical and mental wellbeing and
that being out of work can lead to poor health and other negative outcomes.

How many other studies, with regard to particular illness' has the
DWP been involved in with funding prior to this?

We are not aware of any earlier or subsequent similar trials that have
been funded by the Department.

Has the DWP a particular agenda with regard to ME/CFS such as disregarding the WHO classification of it being a NEUROLOGICAL disease?

The Department fully recognises that ME/Chronic Fatigue Syndrome (CFS) has a wide spectrum of symptoms and can be a severely debilitating condition.
"
https://www.whatdotheyknow.com/request/part_funding_of_the_pace_trial_b


 
policy based on the large body of
evidence showing that work is good for physical and mental wellbeing and
that being out of work can lead to poor health and other negative outcomes.
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That says it all really - the plan all along was to use our illness as part of their agenda of stigmatising and harassing sick people by telling the public that taking our benefits away is for our own good, with the implication that if we refuse work we don't want to get better and are scroungers.

Edited for clarity
 
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We believe that the findings of the trial will contribute to the continuingly growing evidence base, which informs the development of health and work related policy, policy based on the large body of
evidence showing that work is good for physical and mental wellbeing and
that being out of work can lead to poor health and other negative outcomes.
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"We had a desired income from a scientific trial before the trial even started. Also people get ME from being unemployed, except yuppies who get ME from being employed and in their case work is stll the cure".

Work is good for the healthy, bad for those too unwell to work your blood idiots!

Since Sharpe is tweeting out that the MRC funded this trial, as if that's some kind of rubber stamp of his warped conclusions, I think he needs to be tweeted the DWP response to why they also funded it.
 
In his role as Chief Medical Adviser he felt it reasonable to support this trial, particularly as when the trial was initially being developed, consideration was given to exploring the use of a five point measure of work and social adjustment, which would look
at employment and social outcomes for people taking part in the trial.

Additionally, one of the secondary measures considered as part of the trial, was the impact that the trial would have on ability for employment and study.
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Funny how they dropped all that in the trial as part of the objective measures.

Although it seems there was no proof of returning to work after the treatments. I wonder if the DWP has an opinion on that now after admitting they had that as a desired outcome as a reason for funding the trial.
 
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Indigophoton said:
She says that due to the number of MPs who attended, and the lack of time for them to make substantial points, she thinks there is "a strong case for ME Treatment to be debated at greater length in Parliament".
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A petition created last March to 'Debate in Parliament the absence of an effective policy for the treatment of M.E' closed after only six weeks instead of the usual six months because of the general election, but attracted interest and support from quite a few MPs, maybe at least partly as it linked to the book by former MP Dr. Ian Gibson and Elaine Sherriffs, 'Science, Politics and ME'. https://petition.parliament.uk/archived/petitions/190618
 
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New Facebookpost from Monaghan:

Thank you to everyone who contacted me regarding my Westminster Hall debate on the PACE trial and its impact on people living with ME.

The experiences you have described have been highly informative and, in many cases, disturbing. Unfortunately, due to the sheer volume of correspondence I have received, I have not been able to respond to everyone individually. Rest assured, the messages I received helped inform my comments on Tuesday.

Remember, if you live in Scotland and would be willing to talk about your experience of the PACE trial with a journalist who is looking to cover the story, please get in touch with me at carol.monaghan.mp@parliament.uk or send a message via my Facebook page. This could be kept anonymous if you wish, and would be extremely helpful in order to continue the momentum of the campaign.

As I have said, I believe this debate is only the starting point and I hope that the PACE trial will be subject to wider debate in the House of Commons. I will continue to do all I can to ensure that your voices are now heard.

https://www.facebook.com/CarolMonaghanSNP/posts/1411883778938814:0
 
Someone just posted this on the ME association Facebook page which I've copied. (Thanks to long-term campaigner Anita Roddam for this find and transcript)


It's a transcript of a speech by an MP 30 YEARS ago calling for a House of Commons debate on this area of neglect. No mention if PACE obviously but otherwise shockingly familiar. The debate was refused and the neglect continues ... could be quoted by those wishing to highlight how long the sane neglect, suffering and absence of concerted action has gone on. This was before I got sick and ended up bedridden, all totally unecessarily.






HANSARD Commons Sitting

Myalgic Encephalomyelitis


House of Commons 23 February 1988 4.36 pm

§Mr. Jimmy Hood (Clydesdale) I beg to move, That leave be given to bring in a Bill to require an annual report to Parliament on progress made in investigating the causes, effects and treatment of myalgic encephalomyelitis. First, I should like to pay tribute to the many sufferers who have written to me in the past few days telling me of their personal suffering from the illness myalgic encephalomyelitis—an illness that is also known as post-viral fatigue syndrome.

I should like to pay tribute to the Myalgic Encephalomyelitis Association and the Myalgic Encephalomyelitis Action campaign for the tremendous work that they do for the sufferers of this terrible and devastating illness and for the help that they gave me in preparing the Bill.


The ME illness was first observed in Britain 33 years ago in 1955, but it was observed in other countries as early as 1939. Research into the disease is being carried out in Britain at St. Mary's hospital in Paddington, Glasgow university and establishments elsewhere. Research is also being carried out abroad, notably in Australia and the United States of America.


Research shows that ME appears to be caused by viral infection, combined with a dysfunction of the immune system. There is no doubt that ME is an organic disease. The nature of the disease is such that it primarily strikes the central nervous system, the brain and body muscles. Its most common symptom is a profound weakness of the body, which results in even the most active of people being confined to their bed for long periods, sometimes years.


Another symptom that is more distressing than that is the illness's effect on the brain. Some normally bright, alert people find themselves unable to function. Their concentration goes; they have difficulty speaking; and even conversation leaves them completely exhausted. Sufferers lose their jobs and their lives come to a halt. Children affected lose out on their education, sometimes for years. For many children the disease totally devastates their lives.


The greatest suffering of all is the anguish caused by misdiagnosis. On top of the physical and mental stress caused by the disease, sufferers' agonies are compounded by being told that they are well, that there is nothing wrong with them, that they are malingering, or that they are neurotic. It is widely acknowledged that many incidences of suicide result from the refusal of doctors to accept that sufferers are ill from myalgic encephalomyelitis.


The Bill is a simple measure which merely requires the Secretary of State to make an annual report to Parliament describing the progress that has been made in investigating the causes, effects, incidence and treatment of ME. Such 168 a report would be of enormous value in drawing the attention of the medical profession, sufferers themselves and others to whom sufferers may turn for help to what is known about the illness. I cannot emphasise enough how vital it is to give proper recognition to the condition, as the failure to recognise the reality of the illness causes sufferers such great and wholly unnecessary distress.


The following are authentic examples of suffering caused by ME. A mother wrote to me saying: My son aged 18 died from this miserable illness last March. He was away at university and had been ill on and off for two years. It all started with an attack of glandular fever. Now we look back over this time and so many things fit into a pattern. He was an active, bright young man with a zest for living and life. This illness got in his way. She concluded by telling me that her son committed suicide.


Then there was Jill from Sussex, who said: I have been to hell and back with this devastating illness. I am still not recognised or getting proper benefits. I have received hundreds of letters about similar experiences from all over Britain, as well as Northern Ireland and the Isle of Man.


Many well-known persons are afflicted with the disease. Sufferers include the Dean of Westminster; David Provan, a Scottish international footballer who had to retire from a promising career; a famous ballet dancer who is now confined to a wheelchair; and Clare Francis, a well-known adventurer and authoress. I inform the House that one of its Members, my hon. Friend the Member for Pontypridd (Mr. John), who is a sponsor of the Bill, is a sufferer.


I submit that the case for justice for ME sufferers is proved beyond all doubt. I have tried today to resist the temptation to speak in strong terms about the failure of the medical profession to recognise myalgic encephalomyelitis and the failure of the Department of Health and Social Security to recognise the plight of ME sufferers. The sufferers are denied proper recognition, misdiagnosed, vilified, ridiculed and driven to great depths of despair. They look to this House for justice. For them all I commend the Bill to the House.


Question put and agreed to.


Bill ordered to be brought in by Mr. Jimmy Hood, 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.
 
This happened on the 15th April 1988

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 15 April 1988 vol 131 cc519-20 519
Order for Second Reading read.

Hon. Members Object.

§ Madam Deputy Speaker Objection taken.

§ Mr. Jimmy Hood (Clydesdale) On a point of order, Madam Deputy Speaker. First, I must express my deep feeling of outrage that the Government Whip, the hon. Member for Watford (Mr. Garel-Jones)—

Hon. Members Order.

§ Madam Deputy Speaker Order. I am in the Chair. I remind Ministers that I am the one to call order. Will the hon. Member for Clydesdale (Mr. Hood) sit down?

§ Mr. Hood My point of order, Madam Deputy Speaker, is this. As the promoter of the Bill, can I seek your advice? The Government Whip acts on behalf of the Government. Will he tell the House whether he is acting on behalf of the Minister in opposing the Bill? If so, let me tell him that he has betrayed the hundreds—

§ Madam Deputy Speaker Order. Again, I perfectly follow hon. Members' frustrations when they have worked hard on a Bill of this nature, but this is not the moment to debate it.

§ Second Reading deferred till Friday next.

§ Mr. Nigel Spearing (Newham, South)
On a point of order, Madam Deputy Speaker. Will you confirm that it is in order for any hon. Member to object to any of these Bills being passed without debate and, indeed, without disclosing either their identities or their reasons?

Will you also confirm that there is no reason in the Standing Orders of the House why any hon. Member should not volunteer at that stage or indeed later, not only 520 his identity, but—particularly if he is a Minister, by letter to the hon. Member in charge of the Bill—the reasons for his objection to the Bill's being taken without debate?

§ Madam Deputy Speaker
I could not have put it better myself. Therefore, I have no intention of repeating exactly what the hon. Gentleman said.​

and then 22nd April

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 22 April 1988 vol 131 cc1168-9 1168
§ Order for Second Reading read.

Hon. Members
Object.

§ Mr. Deputy Speaker
Second Reading what day?

§ Mr. Jimmy Hood (Clydesdale)
On a point of order, Mr. Deputy Speaker. Last week the hon. Member for Watford (Mr. Garel-Jones) opposed the Bill, and this week the Government Whip, the hon. Member for Penrith and The Border (Mr. Maclean), has opposed it, yet hundreds of Conservative Members are replying to sufferers of 1169 myalgic encephalomyelitis saying that they support my Bill. The Government are clearly opposing the help that sufferers need—

§ Mr. Deputy Speaker
Order. The hon. Member has made his point.

§ Second Reading deferred till Friday 13 May.
​
and then

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 13 May 1988 vol 133 c652 652
§ Order for Second Reading read.

Hon. Members
Object.

§ Second Reading deferred till Friday 8 July.​

and then

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 08 July 1988 vol 136 c1372 1372
§ Order for Second Reading read.

Hon. Member
Object.

§ Second Reading deferred till Friday 28 October.​

and then I lose it, there is no attempt at a Second Reading on the 28th October that year.

ETA: I've created a new thread with this information here, https://www.s4me.info/threads/m-e-h...myalgic-encephalomyelitis-into-law-1988.2598/
 
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Andy said:
This happened on the 15th April 1988

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 15 April 1988 vol 131 cc519-20 519
Order for Second Reading read.

Hon. Members Object.

§ Madam Deputy Speaker Objection taken.

§ Mr. Jimmy Hood (Clydesdale) On a point of order, Madam Deputy Speaker. First, I must express my deep feeling of outrage that the Government Whip, the hon. Member for Watford (Mr. Garel-Jones)—

Hon. Members Order.

§ Madam Deputy Speaker Order. I am in the Chair. I remind Ministers that I am the one to call order. Will the hon. Member for Clydesdale (Mr. Hood) sit down?

§ Mr. Hood My point of order, Madam Deputy Speaker, is this. As the promoter of the Bill, can I seek your advice? The Government Whip acts on behalf of the Government. Will he tell the House whether he is acting on behalf of the Minister in opposing the Bill? If so, let me tell him that he has betrayed the hundreds—

§ Madam Deputy Speaker Order. Again, I perfectly follow hon. Members' frustrations when they have worked hard on a Bill of this nature, but this is not the moment to debate it.

§ Second Reading deferred till Friday next.

§ Mr. Nigel Spearing (Newham, South)
On a point of order, Madam Deputy Speaker. Will you confirm that it is in order for any hon. Member to object to any of these Bills being passed without debate and, indeed, without disclosing either their identities or their reasons?

Will you also confirm that there is no reason in the Standing Orders of the House why any hon. Member should not volunteer at that stage or indeed later, not only 520 his identity, but—particularly if he is a Minister, by letter to the hon. Member in charge of the Bill—the reasons for his objection to the Bill's being taken without debate?

§ Madam Deputy Speaker
I could not have put it better myself. Therefore, I have no intention of repeating exactly what the hon. Gentleman said.​

and then 22nd April

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 22 April 1988 vol 131 cc1168-9 1168
§ Order for Second Reading read.

Hon. Members
Object.

§ Mr. Deputy Speaker
Second Reading what day?

§ Mr. Jimmy Hood (Clydesdale)
On a point of order, Mr. Deputy Speaker. Last week the hon. Member for Watford (Mr. Garel-Jones) opposed the Bill, and this week the Government Whip, the hon. Member for Penrith and The Border (Mr. Maclean), has opposed it, yet hundreds of Conservative Members are replying to sufferers of 1169 myalgic encephalomyelitis saying that they support my Bill. The Government are clearly opposing the help that sufferers need—

§ Mr. Deputy Speaker
Order. The hon. Member has made his point.

§ Second Reading deferred till Friday 13 May.
​
and then

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 13 May 1988 vol 133 c652 652
§ Order for Second Reading read.

Hon. Members
Object.

§ Second Reading deferred till Friday 8 July.​

and then

MYALGIC ENCEPHALOMYELITIS BILL
HC Deb 08 July 1988 vol 136 c1372 1372
§ Order for Second Reading read.

Hon. Member
Object.

§ Second Reading deferred till Friday 28 October.​

and then I lose it, there is no attempt at a Second Reading on the 28th October that year.
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Did I see right that Brynmor John was one of the sponsors of this Bill. I wonder if Carol Monaghan knows about him and the circumstances of his death?
 
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