Backbench Business Committee for next Parliament debate

Hope4mefibro are hoping to get USB sticks of Montoya and Weir talking about GOOD care. They are forceful about the harm of exercise. These could be useful for your MP to watch.

 

I think this is right , I think CBT is not the main issue ...it’s the versions of GET and the thinking that gentle exercise is still good (e.g. yoga etc). It’s a hard one, but I think as well as GET removal we need to educate the GPS and everyone else in the medical profession that exercise of any sort will potentially harm the patient, so to advise exercise at all (whether as advice, CBT, pain management etc.) is a big no no. That should be part of the GP education, then GET, CBT or MEA endorsing yoga becomes something to argue over using the guidelines and gives the patient some protection against the insurance industry ‘misinterpreting’ things etc.

Not sure how this should be worded, or what evidence we can use to substantiate it (surveys of patients seem weak, but if it’s the best we’ve got?) but a “better safe than sorry” approach should be adopted I think.

 

This is where I get confused , especially when some say we shouldn’t be distinguishing me from CFS. Because I can’t see NICE not continuing GET for much CFS, I think they will just not roll it out for all mild to moderate as they do now, so it will be more a possible “useful tool” than a general treatment . Therefore GET will still be recommended as per nice for some under the CFS umbrella. Is that Ok as long as people with more complex severe types aren’t co Erced into it.

The rehabilitation narrative extends to the severe too. There’s not one health professional I meet who doesn’t think I can turn my illness around if I tried and doesn’t show disapproval for my wanting biomedical research to get me better, which is seen as passive and negative for an illness everyone thinks we all can get alot better from .

 

I think the key point is that nobody knows, least of all the medical profession, who the people are that will be harmed by GET, or any form of exercising that pushes PwME beyond their pacing limits. My wife is mild/moderate, and she is always driven to push herself to (and sometimes slightly beyond) her limits, and over the years I have come to trust she has an instinctive sense of when to stop. If anyone ever tried to force GET onto her, I would tell them where to GET off! The point is that nobody knows who will be harmed, so it is a medically sanctioned form of Russian roulette.

For PwME and GET, there is absolutely no way anyone yet knows if, for any one individual, GET will irretrievably harm them or not. Not just harm them, but irretrievably harm them! The BPS mind set (which they seem to have a love affair with) seems to be that because the condition is down to the patient's unhelpful beliefs about their illness, GET cannot really harm them; the BPS-set might even think that even if it does "set the PwME back a bit", it will not be irretrievable because they just have to start thinking straight.

We have to get across that the really unhelpful beliefs are on the BPS side, and that those unhelpful beliefs are what can harm many PwME.

 

ETA: I wanted to share a facebook post with this video from Carol Monaghan herself, but the text disappeared.

Anyways, here is what she wrote:
I have presented an application to the Backbench Business Committee for a full debate in the House of Commons on the diagnosis and treatment of ME.

Following two Westminster Hall debates earlier this year, there is cross-party support for a full chamber debate. We should hear about the application in the coming days and I will, of course, keep you updated.

And here is link to her Facebook page if you want to like the post and/or add a comment:

 

It's tricky, Over. I am about to take George out for his evening amble. I can amble around for 45 minutes or so (at a fraction of my healthy pace), and with suitable breaks, can manage a little more. The key fact is that I can't overdo it. I have a clear limit. So it isn't the exercise that is always wrong, it is the assumption that it can be steadily increased: that we can push through our limits. Of course, many people have much lower limits than me: that's what drives me on to campaign on their behalf. But we have to be careful to make accurate statements.

 

My limit is about 2 minutes. On a good day. Luckily the Tribunal agreed with me that my limit was under the 20 metres thing... At least I have an NHS provided wheelchair now, so the argument that my wheelchair didn't count as it wasn't NHS provided will be gone next time I have to do the PIP thing. 7 years now I think. I'll hopefully be dead by then.

 

The claim that gradually increasing exercise will lead to a cure or significant improvement is harmful as it puts pressure on the patient to do more and more, which doesn't work. It's based on the now discredited deconditioning hypothesis. The latest GET paper agrees that GET doesn't work by increasing fitness.

They now talk about fear-avoidance. Which is to say that manipulating patient views and beliefs results in better health according to questionnaires which reflect patient views and beliefs...

 

I really hope, like I really really hope, that these callous self-serving BPS 'bar stewards' will be well and truly sorted long before 7 years is up. A lot is happening now. The fact they fight back so hard shows them for what they truly are, and there is some encouraging biomedical research underway. So I'm sorry, I have to respectfully disagree with you very strongly on one point: I earnestly hope you hang in there to see this all happen.

 

Thanks @Barry, just so weary of it all. Plus have dentist tomorrow... My dentist is very good and very kind and very ME friendly, but sometimes it all just gets too much.

Sad that I managed to get our porch staged for the Trick or Treaters but then too knackered to see any of them. OH did the answering the door thing - he wore his black fedora hat and his Half Man Half Biscuit T-shirt that has a skull and crossbones on the front. He rather scared some of the littler ghosts. Until they realised he was Mostly Harmless (anyone else here play Elite on the BBC computer?) and came bearing sweeties.

ETA: Sorry to go off topic.

 

Weren't they both the same thing? Fear of having a real physical illness, causing patients to avoid doing the exercise needed to recover from the deconditioning?

 

The ME debacle is a bit of a Halloween itself, with an awful lot of tricksters and not much in the way of treats.

 

Stay strong @ladycatlover. My walking limit is about the same as yours and same age as you, and it’s a nightmare. I was distraught yesterday after 4 days in bed but the H of C cheered me up. I want to be here to see that lot get their comeuppance.

Even more cheered this pm when I saw the Consultant who told me ME didn’t exist 3 years ago. Today he told me I should only consider exercise within my ME limits. He, a Prof, spent nearly an hour with me and is referring me to a geneticist. Could not have been more attentive. We are making progress.

 

Yes I can do nearly 3500 steps in a day if I don’t do any thinking stuff, and this drops to 2000 if I do work. but I think the issue is that is a choice. I can do walking or sitting at a computer working, if I shower it’s unlikely I will be able to do anything physical for a few hours etc etc.

The point is this isn’t a recommendation or treatment...it’s lifestyle and that varies from person to person. There is a big difference between choosing priorities oneself and being told to exercise as a treatment and fitting this around lifestyle energy expenditure. Especially as it’s been proven to be of no benefit at all for people with ME.

So to avoid doubt doctors should just have a blanket ban on advising any physical exercise. Their line should be pacing and trade offs with no opinion of how you spend your energy/spoons whatever ...mainly because they can have no idea what limits the patient actually has from day to day, and who are they to say you should do a walk instead of showering anyway...I might want to smell nice for a romantic meal with Mrs Sloth ...I don’t want to be pressurised to exercise or do yoga or Pilates ...what possible benefit is that in the scheme of things?

 

I agree! And the clip about the fate of children with chronic conditions like M E EDS etc has been sent to the Suffolk Safeguarding Children's Board who debate out concerns on Monday 5th October!


Main Body of the Suffolk Safeguarding Children's Board Report:
The concerns raised by the Suffolk Youth and Parent Support Group concern chronically sick children.
The group have evidence from parents of children who either have a diagnosis or are suspected of having ME (sometimes described as Chronic Fatigue Syndrome), Fabricated and Induced Illness, Hyper-mobility Syndrome, Chronically Sick Children, POTS and OI * that these children are not being given adequate information and support and are not being adequately safeguarded, largely due to a lack of knowledge and understanding about these chronic long term conditions and the children’s very specific needs by schools including alternative provision and EOTAS and statutory authorities (health and social care).
*Postural Orthostatic Tachycardia Syndrome ‘POTS’ and Orthostatic Intolerance ‘OI’
The group feel that school and LA attendance officers, safeguarding leads and Governing Bodies in schools need additional training to understand these health conditions/diagnoses in order to demonstrate ‘best practice’ and to meet the Statutory Guidance and new legislation for children with medical needs.
There needs to be better awareness, more timely and informed communication and liaison generally, but specifically between the schools, In Year Fair Access Panel (IYFAP), EOTAS/Alternative provision practitioners, LA Attendance lead officers and specialist medical experts who oversee these children.

Suffolk Youth and Parent Support Group are exploring these issues within the Community Engagement Partnership for NHS Ipswich and East Suffolk CCG, Health Scrutiny and Overview and with all 7 CCGs on Norfolk and Suffolk covered by specialist ME Services.

Tracy Murphy
Professional Adviser LSCB
3rd Floor
Endeavour House
8 Russell Road
Ipswich
Suffolk
IP1 2BX
Mobile: 07736 610368
Tel: 01473 260530
T R is preparing a briefing for the Community Engagement Partnership which meets very soon on this issue.

In response to question as to what we wish the board to do;

Initially this is to draw attention to a problem, recognise the problem and to raise awareness with the board of a very serious and growing problem.

1. I would like the board to see the short piece in the issue of children in the Parliamentary link- It’s only a few minutes.
2. I would like to loan the banner ( used at the RCGPs AGM recently) to be displayed to raise awareness with the board- can drop it and collect afterwards from Endeavour?
3. I would like a statement issued in the future from the board about the legal obligations and responsibility of all to comply with Statutory Guidance for sick children and the disability legislation. (especially schools management, Academies and Governing Bodies/Trusts), Social care staff as well.
4. It will be for school/academies to arrange a suitable robust training of staff on these matters. However a caution here. The "bought in’ third party training material in our view is part of the wider problem specifically for this group of children.
5. The issue rarely is a problem at individual classroom teacher level, as often the children are absent or have attendance problems- unresolved by school’s higher management.
6. Communication about this to Governing Bodies and other agencies is where the real need lies.

 

Good.

 

May not agree with his politics but can’t fault his support:
“Having come this far I want to see this thing through”

 

I have been watching the Backbench Business Committee each Tuesday, for news of whether any House of Commons time has been allocated yet.
Quote below from a committee member in respect of another application on Tuesday 20 November 2018 Hansard:

“Bob Blackman: Unfortunately and very sadly, notwithstanding the importance of the application and the number of speakers you have, we have no Chamber time whatever to allocate. However, we potentially can guarantee you a three-hour debate in Westminster Hall. It depends on your requirements, in terms of time-sensitivity........

We could provide you with the certainty of a three-hour debate in Westminster Hall. Debates in the Chamber that are set for three hours very rarely get three hours; they get two and half hours, if we are lucky, because we get squeezed by statements and UQs. The reality is that given the queue of debates in the offing on time-sensitive issues, and the lack of Chamber time, you wouldn’t get a debate on this until probably the end of January, if you waited for the Chamber. Under those circumstances, would you accept a Westminster Hall opportunity, if one were forthcoming?”

So the third ME debate is in ‘the queue’.

 

Thanks @It's M.E. Linda.

There's no time for anything these days because of Brexit stuff. It seems to have taken over all time in Parliament at present. They're all mad as a box of frogs currently from what I see on TV news and read in papers.

Is it worth having another Westminster Hall debate? Or is it just more of the same and maybe a bit pointless? While we here, and other patients, will take notice, I don't think it's going to make the press sit up and take notice as well as a debate in the Chamber would. But perhaps anything is better than nothing?