Petition: Opposing MEGA

[Barry53]

No sensible doctor would claim that any single treatment is effective in all cases of any disease, so I don't see Phil Hammond as saying anything that could be construed as contradicting his colleague Esther Crawley. (I'm not trying to disagree with you by the way, as I hope you are right, I'm just airing what I see from my own perspective).

Yes, I do appreciate your point Jo. My hope is that, no matter what the (sort of) technicalities are, the innocently uninformed will interpret what they read, from a publicly popular doctor, the message that he got it wrong and that ME/CFS is real. Yes the message is a little muddled, but at the very least it must make some people think again, and hopefully rattle some cages.

 

[Jo Best]

Yes, I do appreciate your point Jo. My hope is that, no matter what the (sort of) technicalities are, the innocently uninformed will interpret what they read, from a publicly popular doctor, the message that he got it wrong and that ME/CFS is real. Yes the message is a little muddled, but at the very least it must make some people think again, and hopefully rattle some cages.

Yes Barry, I said in another thread that I agree that it's fine on the face of it and I wouldn't bother to comment on reading between the lines were it not for the context and timing (FITNET, MEGA etc.) My other comment was here - http://forums.phoenixrising.me/inde...-eye-me-cluster-bomb.48034/page-3#post-789281

 

[worldbackwards]

I'm curious as to whether Kelvin Hopkins has been a friend in the past and who he's been talking to. To be continued!

 

[Barry53]

Those questions by MP Kelvin Hopkins are very hard hitting, and the PACE scandal is getting an airing in parliament now.

By the look of it Kelvin Hopkins is getting similar treatment to everyone else asking pertinent questions - getting kicked into the long grass. But in a way just asking the questions is more important - the people fielding them will begin to realise (likely already are I suspect) there is a groundswell of opinion they can only disregard for so long.

 

[Barry53]

@Countrygirl: Just sent Kelvin Hopkins a very short but sincere thank you email. Never heard of him before, but all of a sudden he impresses me greatly.

 

[Binkie4]

@Countrygirl- likewise. I wonder who he has contact with. Shows the effect of this illness. Can't just be ill but have to wonder who his contacts are.
I hope to recover from that and just be grateful. I am grateful for this acknowledgement of our illness and the politics around it.

 

[daisybell]

You can 'like' his questions - I don't know if that has any effect but it can't do any harm if someone notices how much interest/appreciation there is for him asking the questions about PACE and the MRC....

 

[Dx Revision Watch]

@Countrygirl- likewise. I wonder who he has contact with. Shows the effect of this illness. Can't just be ill but have to wonder who his contacts are.
I hope to recover from that and just be grateful. I am grateful for this acknowledgement of our illness and the politics around it.

MPs often submit Parliamentary Written Questions as a result of a constituent having approached them to submit the question(s) on their behalf. My understanding is that we can only ask the MP for our own constituency to table a Written Question.

I am not party to the history behind the instigation of these several WQs that have been tabled by Mr Hopkins nor do I know whether he has a personal interest in ME or a previous political interest in issues affecting the ME patient group*.

*See next post.

MPs can also table EDMs (Early Day Motions) to draw attention to matters of public concern:

http://www.parliament.uk/about/how/business/edms/

 

[Dx Revision Watch]

Kelvin Hopkins is MP for Luton North (Labour)

Electoral history
Member for Luton North May 2015 -
Member for Luton North May 1997 - Mar 2015
Contested for North Luton Jun 1983

Parliamentary career
Shadow Secretary of State for Culture, Media and Sport Jul 2016 - Oct 2016

Political Interests
Economic policy, transport, arts, European Union

Voting History

https://www.theyworkforyou.com/mp/10288/kelvin_hopkins/luton_north

Profile

https://www.theyworkforyou.com/mp/10288/kelvin_hopkins/luton_north#profile



Mr Hopkins is not an Officer of the current APPG on ME (All Party Parliamentary Group for ME). I cannot confirm whether he is listed as having been one of the "Qualifying Members" for the current group:

http://www.publications.parliament.uk/pa/cm/cmallparty/161124/myalgic-encephalomyelitis-me.htm


Edited to add links to some previous activity in the area of ME:

http://www.meassociation.org.uk/2007/02/appg-on-me-nice-changes-speaker/

In 2007, Mr Hopkins was listed in this MEA report as having indicated he would be attending a meeting of the APPG on ME in which the main topic of discussion would be the NICE draft clinical practice guideline for CFS/ME. (Speakers were expected to be Professor Peter Littlejohns, Clinical and Public Health Director of NICE, and Dr Esther Crawley, Consultant Paediatrician and Guideline Development Group member).

Mr Hopkins was a member of the APPG on ME as the group stood in 2010. Report by me (on ME agenda site) here:

https://meagenda.wordpress.com/2010/07/29/all-party-parliamentary-group-on-me-reforms/

(Also a member of the APPG on ME in 2008 and 2009.)

Mr Hopkins also signed an EDM, in 2013, welcoming the launch of the UK ME/CFS Research Collaborative, reported by the MEA, here:

http://www.meassociation.org.uk/201...esearch-collaborative-on-mecfs-23-april-2013/

He does not appear to have been a member of the APPG on ME's outgoing group in March 2016. I cannot find a full list of current members of the reformed group for this current Parliamentary Year to confirm whether he is currently a member.

 

[Dx Revision Watch]

The ME Association doesn't appear to have listed the several Written Questions and Written Answers tabled by Kelvin Hopkins MP on their News pages or via Twitter.

Nor has Action for M.E.

 

[Dx Revision Watch]

APPG on ME Officers and members

September 2016

https://www.actionforme.org.uk/uploads/pdfs/appg-officers-members-021116.pdf

Confirms that Kelvin Hopkins MP (Luton North, Labour) is not currently a member of the APPG on ME.

 

[lilpink]

@Countrygirl: Just sent Kelvin Hopkins a very short but sincere thank you email. Never heard of him before, but all of a sudden he impresses me greatly.

Ditto. I have mailed him and copied in my own MP with whom I've already started a dialogue.

 

[Binkie4]

@Countrygirl and @ lilpink- ditto also copying in our MP.

 

[Jo Best]

The ME Association doesn't appear to have listed the several Written Questions and Written Answers tabled by Kelvin Hopkins MP on their News pages or via Twitter.

Nor has Action for M.E.

The list and links were posted by Invest in ME (Research) in their facebook group -
https://www.facebook.com/groups/5804522506/permalink/10154153112497507/

 

[Dx Revision Watch]

The list and links were posted by Invest in ME (Research) in their facebook group -
https://www.facebook.com/groups/5804522506/permalink/10154153112497507/

Thank you, Jo, useful to have them collated. Will be interesting to see what responses Mr Hopkins receives for the latest three Qs.

 

[AndyPR]

The ME Association doesn't appear to have listed the several Written Questions and Written Answers tabled by Kelvin Hopkins MP on their News pages or via Twitter.

Nor has Action for M.E.

Has anybody made the ME A aware? Personally I wouldn't bother with the AfME but if they don't know about it then they can't post it.

 

[AndyPR]

Has anybody made the ME A aware? Personally I wouldn't bother with the AfME but if they don't know about it then they can't post it.

Never mind, I've posted a link to the the IiME post to each page, now we can start to judge them if they don't post anything about it.

 

[Dx Revision Watch]

Has anybody made the ME A aware? Personally I wouldn't bother with the AfME but if they don't know about it then they can't post it.

MEA usually picks up on Parliamentary Qs without prompting.

ME in Westminster stuff is sent out to Co-Cure (for which Dr Charles Shepherd is a member) and Marc-Alexander Fluks puts Written Qs and As out on several lists, including Local-ME Yahoo Group, for which Dr Charles Shepherd is also a member.

If they are not on the MEA's News page by early next week, I will ask MEA's Tony Britton if the MEA is going to post them.

 

[batteredoldbook]

Yes, I do appreciate your point Jo. My hope is that, no matter what the (sort of) technicalities are, the innocently uninformed will interpret what they read, from a publicly popular doctor, the message that he got it wrong and that ME/CFS is real. Yes the message is a little muddled, but at the very least it must make some people think again, and hopefully rattle some cages.

Yes Barry, I said in another thread that I agree that it's fine on the face of it and I wouldn't bother to comment on reading between the lines were it not for the context and timing (FITNET, MEGA etc.) My other comment was here - http://forums.phoenixrising.me/inde...-eye-me-cluster-bomb.48034/page-3#post-789281

The confusion and difficulty here stems from the fact that the Eye article (November 25, 2016) is two things at once. It is a genuine and welcome turnaround in opinion from someone who has clearly been listening to people with M.E (pwme), but it is also playing British medicine's new game: paying lip service to biological causation while continuing to treat M.E as if it were "predominantly perpetuated by unhelpful illness beliefs" (Pace).

The conflation of psychological and physical conditions continues unabated (hence the importance of addressing the proposed "MEGA" trial's apparently broad selection criteria at the outset). Prof. Holgate of the UK "CFS/ME Research Collaborative" appeared, at first, to have recognized the problem of "CFS"'s heterogeneous population. However he unfortunately seems to have failed to grasp that the contradictory grouping of "CFS" (containing both those helped and those harmed by exercise) was the result of simple, reversible, choices and prejudices from doctors as opposed to unspecified unknowns within the disease itself.

Progress within Myalgic Encephalomyelitis could be made at stroke were those with Post Exertonal Malaise separated from those with Pre-Exertional malaise (or "Deconditioning"). However, at present, British medicine appears to have lost the ability or the will to even try to make such judgements.

That there is a grave problem here is clearly underlined by the fact that medicine is responding to a heterogeneous population with a homogeneous treatment programme: CBT/GET. The latter has become a "one size fits all" treatment for M.E patients despite repeated reports of harm.

Medicine should act as a telephone exchange: the job here is to connect the right person to the right treatment. Any treatment capable of effecting change can effect negative change if applied to the wrong context, in this case, the wrong disease. If you approach doctors with this idea (as I have done) they will readily agree with the concept, but will then simply fail to address the issue in practice.

We are left with the vacuity of declaring "CBT safe" without specifying which cognitions will be challenged and why. We are left with Evidence Based Medicine founded upon the opposite of M.E patient values. We are left with physicians attempting to increase patients' levels of exertion while simultaneously accepting that the primary symptom of M.E is Post Exertional Malaise (PEM).

Sadly such contradictions appear immune to reason. Yet they are very powerful for those who wield them. They cover all bases, and all exits. They confuse and confound opposition. They are nothing and yet via Logical Explosion, can be used to justify everything.

Within M.E self-contradictions enable physicians to have their cake and, impossibly, to eat it too. However, in the real world such intellectual dissonance quickly reduces down. Doctors end up with double rations while patients are left to go hungry.

@batteredoldbook
14:19 26/11/2016

 

[TreePerson]

You can 'like' his questions - I don't know if that has any effect but it can't do any harm if someone notices how much interest/appreciation there is for him asking the questions about PACE and the MRC....

Hi - where do you go to "like" his question?