Barry
Senior Member (Voting Rights)
This thread was created by moving posts from this thread.
Several posts suggesting and agreeing to the move have been deleted or edited.
In the end, after discussing previously with my wife, decided the best bet was for me to stick to what I do know, and felt comfortable talking about, else would just come across wrong. We went in with two main objectives, the first of which I think went well, and the second as well as could be expected, given a limitation I was unaware of:
Made it clear my wife is mild-to-moderate, and that many people are much worse. Whereas my wife can walk slowly for a mile or two, getting ever slower as she goes, some people are so ill they have so little energy available they can barely get our of bed, and that the most severely ill have only enough energy available to keep them just alive, nothing more. I do think these things struck a chord with him, and his secretary. I tend to get a bit enthusiastic (not bolshie, just passionate) when discussing things close to my heart
.
I did mention the battery analogy I favour, and my wife agrees fits with her. Like an electric car with a worn out battery. Not only does the battery fail to charge more than 40% or so (at a rough guess) for my wife, but the current doesn't flow nearly so well with this knackered battery, and it takes much longer to recharge back to that meagre level than a normal battery would to fully recharge. For more severely affected people the battery is much worse than this. It was clear this was just an analogy - we wanted our MP to get some insight into what day-to-day life is like for PwME, and in this particular case my wife.
We also discussed how my wife is the living example of how the PACE deconditioning notion for PwME is just plain wrong. I explained my wife and I have been together since 1977, and I knew her long before she got ME in 2006. That my wife always, always pushes herself to her boundaries, and that if her problem had been deconditioning, she would have worked her way back to health long time back. She still pushes herself to (and sometimes beyond) her boundaries now, but her boundaries are much more limiting now. Said that although PACE posits that there is a physical element, the argument is that it is deconditioning, and that it can be reversed provided patients are of a mindset to do so. Explained that if my wife constrained herself to avoid all payback, she would have no quality of life at all, and she has learnt how to pace (not to be confused with PACE) so she achieves some balance of the two.
Also discussed how he might discuss with colleagues, and how others might look into some of the issues we discussed. I then asked the question "But what if some of those experts consulted are part of the problem?", which got a quizzical look. So I did drop some names, SW, PD, MS, saying that these folk are still strongly of the belief that PACE and its assertions are right, and to be aware of that. I did then say that before he talked to anyone, I strongly recommended he look at the material we gave him first. He agreed with that before I finished the sentence.
Touched on the employment issue. Prospective employer: OK, we can be flexible. How many hours could you do, and when could you do them? My wife: I don't know. As we said how this is the whole point with ME, our MP and his secretary were both pre-empting my wife and I with why that response was inevitable. Took this as a good sign our education efforts were paying off.
He asked how ME is diagnosed, and my wife explained that for her back in 2006 (and I clarified it is still the same), it was a case of lots of blood tests. Our MP immediately picked up on the fact there is no positive test, and we clarified that that is true at present and is part of the problem. And that a lot of work is underway trying to identify biomarkers. He understood that with some enthusiasm, needing no clarification. I did briefly emphasise that more research investment was needed; don't recall a response to that!
I did also express a worry that because it is clear the NHS is under severe financial pressures, the possibility that government decisions might be made far more biased towards saving money than towards saving people (cannot recall exactly how I phrased it now, but wish I'd thought of that). All agreed it was people that counted, but don't recall any reassurance our worries were unfounded!
Also pointed out that there are others far more qualified than me on much of the detail.
I also think our MP would have picked up on the fact that my wife and I are not vexatious people, even though we strongly argue our case, as best we can, for PwME.
Eventually left, thanking our MP sincerely for his time, and leaving him to apologise to his next constituents for being so late.
Edit: Forgot to mention last night (I was falling asleep as I wrote). I did also briefly mention GET and CBT. Got impression our MP had never heard of GET and a vague recollection of CBT. So in 30s or so manage to get across that CBT, of the form used to help people cope with serious illness, cancer etc, we had no problem with, and could be good. But that the form used for PACE was very different, and based on the idea that people thought they could not recover from their illness, but CBT would help them push through it, no matter how they felt.
This morning my wife and I chatting about this, and we both do feel our MP really was genuinely interested, and actively engaging with us - I don't think it was simple politician's tactics, really don't. We both feel we genuinely left him feeling better enlightened with what it's all about. He did in fact make a point of saying that my persistence in emailing him ( ) had raised his interest and wanting to talk to us. If that is all true, then objective achieved!
ETA: Our MP is Matt Hancock, who was subsequently promoted to Secretary of State for Health and Social Care.
Several posts suggesting and agreeing to the move have been deleted or edited.
My wife and I did in fact attend one of our MP's surgery appointments today. We had been allocated 10 mins and were in there more like 25 mins. Our MP is a Secretary of State (not health).
In the end, after discussing previously with my wife, decided the best bet was for me to stick to what I do know, and felt comfortable talking about, else would just come across wrong. We went in with two main objectives, the first of which I think went well, and the second as well as could be expected, given a limitation I was unaware of:
- Help him to better understand what ME is and is not, at a grass roots day-to-day level. The aim was to educate and motivate him enough to want to understand more; if an MP does not buy into a cause, they are not going to do much to help it. MPs are not necessarily easy to read, but my wife and I both feel there is a strong likelihood the interest he exhibited was genuine. The approach was to help him better understand, and definitely not to chide.
- Ask him to support Carol Mohaghan in gaining a debate in the House of Commons, and to engage in that. He explained to us, and not in a dismissive way, that he is prohibited from actively engaging in public debates in an area that is the responsibility of another secretary of state (health in this case). But he did volunteer that there are many private debates (not sure if he just meant discussions) within parliament, and he would be in a more informed position to engage in such debates.
- On one sheet, two of my posts. https://www.s4me.info/threads/barry-here.180/ and https://www.s4me.info/threads/barry-here.180/#post-6915 ... just the text that I wrote. I asked our MP to read that sheet before further discussion, as I believed it was better than me trying to explain it. I wanted him to read that, with my wife and I in front of him. Although I had mentioned to him in emails before, I clarified I belonged to Science for ME (I am so glad we chose that name now!), and those were two of my introductory posts in it. It took him a less than a minute to read and it was obvious he digested it well. It would have taken me longer to try and explain it, and to lesser effect I think.
- A printout of @dave30th's "Open Letter to The Lancet, Two Years On", http://www.virology.ws/2018/06/19/trial-by-error-an-open-letter-to-the-lancet-two-years-on/. Although I wanted our MP to read the letter later, the primary objective was different. I put a couple of post-its in there, at the start and finish of the signatories. It then was quite graphic to turn it edge on to him, saying "This is the letter itself, and all this in between the post-its is the list of signatories - professors and doctors of many pursuations, medicine, law, journalism, etc. I think it was quite effective: as I showed him this, and he realised the big wad in between was all eminent signatories, he did murmur almost to himself "Oh wow!" He did pick up on the Professor of Music in there, but I emphasised virtually all were medicine, law etc. I really hope he will peruse that list a bit more, later on.
- Our S4ME PACE Briefing Document, https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/. I explained this is a really good primer on the issues with PACE.
- The JoHP special issue on the PACE trial. He had not seen it before. I explained that I had bought two copies when it came out, and that he was very welcome to that copy, but that I would rather take it back home if he was just going to leave on a shelf somewhere, unread; I didn't mind if he wanted to let others have it to read. I used a post-it to mark @Jonathan Edwards' "PACE team response shows a disregard for the principles of science", suggesting he at least read that. I always think this is a good starting point. He did take it, and promised he would at least read the marked article, and possibly more.
Made it clear my wife is mild-to-moderate, and that many people are much worse. Whereas my wife can walk slowly for a mile or two, getting ever slower as she goes, some people are so ill they have so little energy available they can barely get our of bed, and that the most severely ill have only enough energy available to keep them just alive, nothing more. I do think these things struck a chord with him, and his secretary. I tend to get a bit enthusiastic (not bolshie, just passionate) when discussing things close to my heart
.I did mention the battery analogy I favour, and my wife agrees fits with her. Like an electric car with a worn out battery. Not only does the battery fail to charge more than 40% or so (at a rough guess) for my wife, but the current doesn't flow nearly so well with this knackered battery, and it takes much longer to recharge back to that meagre level than a normal battery would to fully recharge. For more severely affected people the battery is much worse than this. It was clear this was just an analogy - we wanted our MP to get some insight into what day-to-day life is like for PwME, and in this particular case my wife.
We also discussed how my wife is the living example of how the PACE deconditioning notion for PwME is just plain wrong. I explained my wife and I have been together since 1977, and I knew her long before she got ME in 2006. That my wife always, always pushes herself to her boundaries, and that if her problem had been deconditioning, she would have worked her way back to health long time back. She still pushes herself to (and sometimes beyond) her boundaries now, but her boundaries are much more limiting now. Said that although PACE posits that there is a physical element, the argument is that it is deconditioning, and that it can be reversed provided patients are of a mindset to do so. Explained that if my wife constrained herself to avoid all payback, she would have no quality of life at all, and she has learnt how to pace (not to be confused with PACE) so she achieves some balance of the two.
Also discussed how he might discuss with colleagues, and how others might look into some of the issues we discussed. I then asked the question "But what if some of those experts consulted are part of the problem?", which got a quizzical look. So I did drop some names, SW, PD, MS, saying that these folk are still strongly of the belief that PACE and its assertions are right, and to be aware of that. I did then say that before he talked to anyone, I strongly recommended he look at the material we gave him first. He agreed with that before I finished the sentence.
Touched on the employment issue. Prospective employer: OK, we can be flexible. How many hours could you do, and when could you do them? My wife: I don't know. As we said how this is the whole point with ME, our MP and his secretary were both pre-empting my wife and I with why that response was inevitable. Took this as a good sign our education efforts were paying off.
He asked how ME is diagnosed, and my wife explained that for her back in 2006 (and I clarified it is still the same), it was a case of lots of blood tests. Our MP immediately picked up on the fact there is no positive test, and we clarified that that is true at present and is part of the problem. And that a lot of work is underway trying to identify biomarkers. He understood that with some enthusiasm, needing no clarification. I did briefly emphasise that more research investment was needed; don't recall a response to that!
I did also express a worry that because it is clear the NHS is under severe financial pressures, the possibility that government decisions might be made far more biased towards saving money than towards saving people (cannot recall exactly how I phrased it now, but wish I'd thought of that). All agreed it was people that counted, but don't recall any reassurance our worries were unfounded!
Also pointed out that there are others far more qualified than me on much of the detail.
I also think our MP would have picked up on the fact that my wife and I are not vexatious people, even though we strongly argue our case, as best we can, for PwME.
Eventually left, thanking our MP sincerely for his time, and leaving him to apologise to his next constituents for being so late.
Edit: Forgot to mention last night (I was falling asleep as I wrote
). I did also briefly mention GET and CBT. Got impression our MP had never heard of GET and a vague recollection of CBT. So in 30s or so manage to get across that CBT, of the form used to help people cope with serious illness, cancer etc, we had no problem with, and could be good. But that the form used for PACE was very different, and based on the idea that people thought they could not recover from their illness, but CBT would help them push through it, no matter how they felt.This morning my wife and I chatting about this, and we both do feel our MP really was genuinely interested, and actively engaging with us - I don't think it was simple politician's tactics, really don't. We both feel we genuinely left him feeling better enlightened with what it's all about. He did in fact make a point of saying that my persistence in emailing him (
) had raised his interest and wanting to talk to us. If that is all true, then objective achieved!ETA: Our MP is Matt Hancock, who was subsequently promoted to Secretary of State for Health and Social Care.
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