UK Parliamentary debate today - Thursday 24th January 2019

I had the impression anyone in the House could vote if it went through the lobby (or whatever it's called), whether they attended or not. But I don't follow the process often enough to know.

What got me so far was when CM mentioned the minister it cut to him, and he had a rather unfortunate smirk on his face.
 
Sir David Amess MP - I Remember Jimmy Hood (my note - he tried a ME bill once) and "here we are all these years later"

Telling story of a trainee teacher, fobbed off with AD's and I was not depressed, too unwell to continue my job, undiagnosed for 7 years, medics can often turn on you with contempt at the mention of ME

Justine Greening MP - need treatments

Sir David A (again) More from his constituent - I am not believed. Lack of understanding by GPs

Julian Lewis MP - speaks of a constituent Rachel King - understanding in schools and her daughter is one of the lucky ones

Sir David A - GP's are failing to recognise or even believe the severity of symptoms. No known cause or treatment. For the NICE guidelines to be a success we need to listen to patients. Isobel (one of his constituents) wrote and thanked him for listening.
 
Adrian Bailey MP - social isolation, lack of DWP benefits. Although we have a world class NHS we still have these problems. Lucy, heading for parliamentary career and struck down. Could only work 10 hours. Described it as her brain being awake as her body slept.

Why the wait for NICE in 2020?

The minister replied on the last debate on medical research but this is being channeled into psych instead of neurological research.

Nicky Morgan MP - must be an increase in funding. Problems and dangers of GET and CBT. NICE must remove those treatments. Issue an immediate statement about these treatments for the period that their guidelines remain in force.

Patients are not believed. Compounds the disease and having a GP that believes would help.

Speaks of constituent who is a housebound mother and now her son is affected.

Another constituent - Alisha - discharged and left with no medical care as no funding for pediatric care

Sarah Reed "tireless" campaigner for sufferers. Mentions MEAction and time that NICE is taking on guidelines

Emma Lewell-Buck MP - lazy or hysterical women. No other illness would have psychosocial treatments. Added on as adjunct if needed but not the main treatment.

PACE added to myths around ME.

Told all in the head and sneered at. Her constituent Barbara Cowell described her GP and rolling of their eyes and others who wanted to help but were worried about GMC.
 
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Something that is clear to me thus far from this debate: writing to your MPs really matters. Again and again, MPs are standing up and saying "I have been contacted by my constituents who said to me..."

It is absolutely vital that we continue to speak to our politicians. It is only through the effort of patients and families that this debate is even happening. This is true of every country, not just the UK.

If you are reading this and have not written to your representative, please do so now. If your representative has made an effort to address the condition, please thank them for their effort.
 
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Kevin Foster MP
Impact this condition has on someone's life but the battle to have this recognised. No test and no cure.
Condition has impact of 3.3 billion a year.
Not able to live life to the full.
NICE guidelines - wants to bring forward guideline from 2010.
Remarkable given the impact so little research. Without research no test and no treatment
Clearly an issue into assessments are given for welfare benefits. A good day goes not reflect the condition.
Minister is not likely to be able to reply fully as not enough time left
 
David Drew MP - mentions Charles Shepherd and the suffering of children. PACE trial and NICE guideline needs to be brought forward. Minister to explain why research cut and DWP, also early support, work for clinical commissioning groups.
Overlap with B12 deficiency, often confused with ME and health bodies need to rewrite rules and recognise properly.
 
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