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Transcript — Programme 122: The Many Faces of Research

Vis­it­ing the fore­front of research into pain conditions

To lis­ten to the pro­gramme, please click here.

This edi­tion of Air­ing Pain has been sup­port­ed with a grant from The Miri­anog Trust donat­ed for this pur­pose. It was record­ed at the end of April 2020, the sec­ond month of the UK’s Covid-19 lock­down. All inter­views were record­ed pri­or to the crisis.

As research for a Covid-19 vac­cine is a pri­or­i­ty for the sci­en­tif­ic com­mu­ni­ty, this edi­tion of Air­ing Pain focus­es on the roles of researchers, and in par­tic­u­lar the many dis­ci­plines that come togeth­er to increase the under­stand­ing, and there­fore the man­age­ment of chron­ic pain.

First up, Paul Evans speaks to neu­rol­o­gist Clau­dia Som­mer, whose research into fibromyal­gia opens debate as to whether the con­di­tion should be treat­ed as neu­ro­path­ic pain.

Phys­io­ther­a­pist David Eas­t­on then talks about the research-led ESCAPE PAIN reha­bil­i­ta­tion exer­cise pro­gramme for peo­ple with osteoarthri­tis in their hips or knees.

And final­ly, Paul vis­its the Uni­ver­si­ty of Bris­tol, where neu­ro­sci­en­tist Brid­get Lumb talks of the need for fur­ther research into the link between famil­iar con­tact and social inter­ac­tion with chron­ic pain – par­tic­u­lar­ly rel­e­vant at a time of social dis­tanc­ing – and social anthro­pol­o­gist Rachael Goober­man-Hill explains the role of the anthro­pol­o­gist in health and pain research.

Issues cov­ered in this pro­gramme include: Fibromyal­gia, arthrit­ic pain, neu­ro­path­ic pain, noci­cep­tive pain, loss of nerve fibres, anthro­pol­o­gy, soci­etal and behav­iour­al aspects of pain treat­ment, qual­i­ta­tive research, acute pain, exer­cise, and joint pain.


Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain, and for those who care for us. I’m Paul Evans, and this edi­tion of Air­ing Pain has been sup­port­ed with a grant from the Miri­anog Trust.

Brid­get Lumb: It’s well recog­nised that pain can be alle­vi­at­ed by famil­iar con­tact with peo­ple. I’ve put in an appli­ca­tion to actu­al­ly try and look at the mech­a­nisms that will under­lie social inter­ac­tions and relief from pain.

Evans: We’re mak­ing this pro­gramme in week five of the COVID-19 lock­down, that’s at the end of April 2020, at a time when research for a vac­cine, diag­nos­tic and anti­body tests are at the fore­front of the sci­en­tif­ic com­mu­ni­ty. So whilst all these inter­views were con­duct­ed before the present cri­sis, I want to focus on the role of research, and in par­tic­u­lar, the many – some­times sur­pris­ing to me, at least – dis­ci­plines that come togeth­er to make liv­ing with chron­ic pain more manageable.

Accord­ing to Ver­sus Arthri­tis, fibromyal­gia affects about 5% of the UK pop­u­la­tion. The name means pain in the mus­cles and fibrous con­nec­tive tis­sues, the lig­a­ments and ten­dons, but it’s not actu­al­ly a joint con­di­tion, but a syn­drome with a set of signs and symp­toms that include mod­er­ate to severe fatigue or lack of ener­gy, sleep dis­tur­bances, headaches, decreased endurance for exer­cise, wide­spread mus­cle aches, and much, much more. As such, many peo­ple are treat­ed under the rheuma­tol­ogy umbrel­la, a rheuma­tol­o­gist being a doc­tor who spe­cialis­es in diag­nos­ing and treat­ing arthri­tis and relat­ed con­di­tions. A neu­rol­o­gist, on the oth­er hand, spe­cialis­es in treat­ing dis­eases of the ner­vous sys­tem. Down­load or read online Pain Concern’s excel­lent leaflet on Neu­ro­path­ic Pain to find out more about that. So if fibromyal­gia is a rheumat­ic con­di­tion, what inter­est does it have for a neurologist?

Dr Clau­dia Som­mer is Pro­fes­sor of Neu­rol­o­gy at the Uni­ver­si­ty of Würzberg in Ger­many. And one of her research inter­ests is fibromyalgia.

Clau­dia Som­mer: A col­league of mine, an anaes­the­si­ol­o­gist, [the] head of the pain clin­ic next door who had many fibromyal­gia patients, one day he asked me, ‘We must find out some­thing about the cause of fibromyal­gia’. And indeed, we were think­ing of rheuma­to­log­i­cal caus­es, and he had some hypothe­ses along these lines. So with him, I start­ed to look at cytokines, which are immune prod­ucts – how do I say it, pro-inflam­ma­to­ry prod­ucts of the body. And we had the hypoth­e­sis that these were increased in the fibromyal­gia patients. This came only par­tial­ly true. In the end, like, like all the hypothe­ses, they may be true for part of the patients. But after I had start­ed this research, I became very intrigued because it’s such a – I know it’s a dev­as­tat­ing dis­or­der, but it’s also a fas­ci­nat­ing dis­or­der, because it has so many aspects. There are so many open ques­tions. This is what intrigued me to dig into this.

Evans: So is fibromyal­gia a neu­ro­path­ic condition?

Som­mer: That’s a ques­tion we can­not answer yet. What we can say is that it shares a num­ber of fea­tures with oth­er neu­ro­path­ic con­di­tions. For exam­ple, loss of nerve fibres in the skin; dis­turbed func­tion of nerve fibres and their tracts; and changes in brain struc­ture and func­tion. But that can also hap­pen in non-neu­ro­path­ic conditions.

Evans: I’m con­fused, what do you mean by loss of nerve fibres in the skin? I mean, what my knowl­edge, as small as it is, is that fibromyal­gia is just a brain con­di­tion. It’s just a mis­bal­ance of chem­i­cals or something.

Som­mer: This is what most peo­ple thought, until a few years ago. But then we and oth­ers exam­ined groups of fibromyal­gia patients very close­ly. And we found that indeed, these patients have reduced nerve fibres in their skin and the remain­ing fibres obvi­ous­ly don’t func­tion as well as they did. And when we first pub­lished it, some peo­ple did­n’t believe it, of course, [and] oth­ers said, ‘Oh, what a great find­ing, final­ly some­body is show­ing some­thing for fibromyal­gia’. And then we were very hap­py that sev­er­al oth­er groups from dif­fer­ent parts of the world – so we’re in Ger­many – but then a group from Italy, from Spain, Greece, from the US, they all had very sim­i­lar find­ings in a very short time. So I think the time was just ripe for this find­ing that there is, at least in a sub­group of patients with fibromyal­gia, a periph­er­al nerve basis to this syndrome.

Evans: So do you think that’s the cause of fibromyal­gia or the result of hav­ing fibromyalgia?

Som­mer: Again, I don’t know, as in human research, it’s very dif­fi­cult to see cause-result, because you only describe some­thing. I find it dif­fi­cult to see it as the result, which does­n’t mean that this can­not be. But it’s dif­fi­cult to imag­ine how a pain syn­drome that ini­ti­ates in the brain would lead to loss of nerve fibres in the skin. For me, it’s eas­i­er to under­stand it the oth­er way around; that there is some defect – it may be genet­ic, it may be of the envi­ron­ment, it may be immuno­log­i­cal – that dam­ages noci­cep­tors. And that this, togeth­er with oth­er fac­tors, trig­gers this whole syndrome.

Evans: You’re going to have to explain to me now, what you mean by noci­cep­tors. What is noci­cep­tive pain, as opposed to neu­ro­path­ic pain?

Som­mer: [They are] two dif­fer­ent things. A noci­cep­tor is the word that we use for a periph­er­al nerve and its nerve cell, so the neu­ron that sig­nals pain. And we have two types of them, we call them C fibres and A‑delta fibres, and they serve dif­fer­ent func­tions, but they both sig­nal pain. So when we acti­vate them, you notice pain, and we call them noci­cep­tors. The term noci­cep­tive pain means pain induced by acti­va­tion of a noci­cep­tor. So, for exam­ple, if I put my hand on a hot plate, this will acti­vate my noci­cep­tors and I will feel pain.

Neu­ro­path­ic pain, by con­trast, is pain caused by an injury dis­ease some­where in the ner­vous sys­tem. So, if I injure a nerve, for exam­ple, by hav­ing an acci­dent, and then these nerve fibres are hyper-excitable, I can have pain with­out any stim­u­lus from the out­side. And this is what we call neu­ro­path­ic pain.

Evans: Okay, going back to the noci­cep­tors and fibromyal­gia – is what you’re say­ing that an injury to some­body, say, hand or leg or limb or any­where else, may have start­ed the fibromyalgia?

Som­mer: We have no evi­dence for this. And in fact, this has been looked at, there have been large sta­tis­tics on whether there is a con­nec­tion between acci­dents and fibromyal­gia and the con­nec­tion was neg­a­tive. What has been shown some time ago, was a con­nec­tion between numer­ous myofas­cial pains and fibromyal­gia. So myofas­cial pain is, for exam­ple, the usu­al neck pain you get when you sit for too long or type too long. So it seems that peo­ple who have these kinds of pain, which we would gen­er­al­ly con­sid­er noci­cep­tive, because we don’t move prop­er­ly and we stim­u­late our mus­cle noci­cep­tors the wrong way. So peo­ple who have these kinds of pain they have a high­er risk of devel­op­ing fibromyalgia.

Evans: Dr Clau­dia Som­mer, Pro­fes­sor of Neu­rol­o­gy at the Uni­ver­si­ty of Würzberg, in Germany.

For many peo­ple liv­ing with chron­ic or per­sis­tent pain con­di­tions, myself includ­ed, we are aware of cur­rent treat­ments, that is, what we’re using now to man­age our con­di­tions. But we’re igno­rant of the work researchers and sci­en­tists are doing away from the pub­lic glare, and also of the many dif­fer­ent dis­ci­plines involved, includ­ing, to my sur­prise, anthro­pol­o­gy. If like me, in my igno­rance, you asso­ciate anthro­pol­o­gists with archae­ol­o­gists and pre-his­to­ri­ans in tele­vi­sion series about the ori­gins and ascent of man, you may be sur­prised to know that they can work very much in the present. Dr Rachael Goober­man-Hill is Pro­fes­sor of Health and Anthro­pol­o­gy at Bris­tol Uni­ver­si­ty, where she’s also Direc­tor of the Eliz­a­beth Black­well Insti­tute for Health Research. And she’s a social anthropologist.

Dr Rachael Goober­man-Hill: We look at what peo­ple do in their every­day lives, and that might be their every­day lives in their homes, or their every­day lives work­ing in a hos­pi­tal, or their every­day lives, for instance, in liv­ing with pain. So what we as anthro­pol­o­gists would do is bring the research tech­niques that we would use in all of anthro­pol­o­gy, and apply them into a pain and health­care con­text. So we do things like chat with peo­ple, have con­ver­sa­tions with peo­ple about how they live with their pain, and their his­to­ry of their pain. We do that in inter­views, and we do that in focus groups. We also do research that involves a researcher spend­ing time, maybe in a clin­ic or a hos­pi­tal, watch­ing what peo­ple do and how deci­sions are made about care, and all that kind of thing.

Evans: That sounds a bit like time and motion to me, almost.

Goober­man-Hill: It is a bit because when we’re col­lect­ing that kind of infor­ma­tion, the researcher will write down what they see. And we’ll look at that infor­ma­tion and bring it all togeth­er to explain why peo­ple do what they do and how peo­ple do what they do. And when we get it pub­lished, that means that deci­sion mak­ers and peo­ple who write guid­ance about care will take that research on board, and look at it and see how it can best inform guide­lines for health­care pro­vi­sion. For instance, Nation­al Insti­tute for Health and Care Excel­lence looks at qual­i­ta­tive research, some of which will be anthro­po­log­i­cal in an approach, and uses that to inform the guide­lines that they write. So large­ly, what we’d do when we’d apply for fund­ing is we’d get togeth­er quite a big group of researchers, usu­al­ly peo­ple with dif­fer­ent back­grounds. And we’d work togeth­er, because we’ve iden­ti­fied that there’s a gap in the research evi­dence. And when we work togeth­er and find that there’s a gap, we then have to design a research project. And we work for many months, usu­al­ly, to design a research project and the kind of peo­ple we would involve would be sta­tis­ti­cians, health psy­chol­o­gists, soci­ol­o­gists, anthro­pol­o­gists, pain doc­tors, sur­geons, etc., etc. And we all come togeth­er as a group. And we then write a pro­pos­al for research.

As I said, that will take many months, what we do then is we’ll sub­mit that to an organ­i­sa­tion like the Nation­al Insti­tute for Health Research. They then have a com­mit­tee of experts who drill down on that research plan, and look at whether it’s need­ed, whether it’s robust, whether it’s appro­pri­ate, and pro­vide com­ments and feed­back to us. And then we go through a long process in which the fun­der makes a deci­sion about whether or not they would fund our pro­posed research project. So it takes a long time from decid­ing that there’s a gap in knowl­edge, to actu­al­ly start­ing a research project with funding.

Evans So how do you find those gaps in knowledge?

Goober­man-Hill: That’s a real­ly good ques­tion. We do some­thing called sys­tem­at­ic lit­er­a­ture review. And we have experts in pulling togeth­er exist­ing pub­lished lit­er­a­ture into one place so that we know whether there’s gaps in the exist­ing knowl­edge or not. And only when we know that there is a gap, and there’s a need for more knowl­edge, should we real­ly then be think­ing about doing more research.

Evans: Just explain to me what qual­i­ta­tive research means.

Goober­man-Hill: Qual­i­ta­tive research is research that usu­al­ly hap­pens on a small scale. It’s inter­est­ed in under­stand­ing why peo­ple do what they do or think what they think, and how peo­ple do what they do and think what they think. So a qual­i­ta­tive researcher is inter­est­ed not in num­bers, but usu­al­ly in words. And that means that a qual­i­ta­tive researcher usu­al­ly has a priv­i­lege of invit­ing peo­ple to come to inter­views and focus groups and talk­ing with them. And for instance, in pain, we would hold focus groups to talk with peo­ple about their expe­ri­ence of liv­ing with pain, and their expe­ri­ence of find­ing health­care for that pain, or what they’ve done in their fam­i­ly to live with pain and those kinds of ques­tions. And that’s what qual­i­ta­tive research essen­tial­ly is, in a nutshell.

Evans: Why is it called qual­i­ta­tive research? Because ask­ing opin­ions to me is not non-qual­i­ta­tive, but equal­ly as impor­tant as numbers.

Goober­man-Hill: So we call it qual­i­ta­tive because it’s dif­fer­ent to quan­ti­ta­tive. Quan­ti­ta­tive research is about num­bers. So in a clin­i­cal tri­al, where we ask peo­ple to fill in ques­tion­naires and, you know, assign scores of one to ten, or one to five against cer­tain things, that gen­er­ates num­ber infor­ma­tion. But qual­i­ta­tive research gives us infor­ma­tion that isn’t about num­bers. It’s about thoughts and feel­ings and words.

Evans: It’s about what we feel, how we live.

Goober­man-Hill: How we feel, and as you said, opin­ions as well, but also, what we do and why we do those things. So when we’re doing qual­i­ta­tive research, we’re ask­ing peo­ple to talk with us in some depth, and that’s a great priv­i­lege. It can take a cou­ple of hours to do a qual­i­ta­tive research inter­view. And we’re not judg­ing those peo­ple in any way, we’re sim­ply ask­ing them what their life is like and how they live and what their health­care has been like. We also do research with peo­ple who pro­vide health­care. So we’ve done research with sur­geons, and we’ve done research with GPs, for instance. So, a par­tic­u­lar­ly inter­est­ing piece of research we did a few years ago was to find out why GPs pre­scribed, or did not pre­scribe, opi­oid med­ica­tion for peo­ple liv­ing with joint pain. And so we inter­viewed twen­ty-sev­en prac­tis­ing GPs – gen­er­al prac­ti­tion­ers – and we asked them about the kind of med­ica­tion they pre­scribed and why they pre­scribed it.

We spoke with them about the patients that they saw. And we spoke with them about their back­ground and their train­ing and their expe­ri­ence. And this was great because the GPs, were real­ly will­ing to talk with us, and that was a great priv­i­lege. The thing which we found real­ly inter­est­ing from that project was that some pre­vi­ous research had sug­gest­ed that GPs were reluc­tant to pre­scribe cer­tain kinds of opi­oid med­ica­tion, because they were wor­ried about addic­tion, tol­er­ance and diver­sion of those med­ica­tions. And so we explored that in inter­views, and what we found was that GPs were think­ing about those issues in some detail, but actu­al­ly, what influ­enced their pre­scrib­ing most was their own pro­fes­sion­al expe­ri­ence of pre­scrib­ing opi­oid med­ica­tion; for instance, whether they’d had expe­ri­ence in the past of work­ing with groups who pre­scribe that kind of med­ica­tion or not. So we then pub­lish that kind of find­ing in an aca­d­e­m­ic jour­nal, and an aca­d­e­m­ic pub­li­ca­tion, it sounds like it’s some­thing that’s going to be very dense and dif­fi­cult to read. But we try to write these things as clear­ly as pos­si­ble. And that’s pub­lished in the jour­nal so that oth­er sci­en­tists can read our work, and know that we’ve done it in a robust research‑y way. It’s gone through peer review, the peo­ple who read it can then know that what we’ve done is actu­al­ly a decent piece of research. And then it’s up to the out­side world to decide what they do with that research find­ing. The peer-review process in research means that research that’s out there in the pub­lic realm is trustworthy.

Evans: Dr Rachael Goober­man-Hill, Pro­fes­sor of Health and Anthro­pol­o­gy, and Direc­tor of the Eliz­a­beth Black­well Insti­tute for Health Research at the Uni­ver­si­ty of Bristol.

So, from the study of what peo­ple do in their every­day lives, I like to think of it as the macro, to the micro, the study of what hap­pens with­in peo­ple’s brains and ner­vous sys­tems. Dr Brid­get Lumb is a Pro­fes­sor of Neu­ro­science at the Uni­ver­si­ty of Bris­tol, she’s pres­i­dent of the Phys­i­o­log­i­cal Soci­ety, and her par­tic­u­lar inter­est is in the under­stand­ing of the basic mech­a­nisms of pain, in par­tic­u­lar, how we make the tran­si­tion from acute pain to chron­ic pain.

Lumb: Acute pain is that imme­di­ate pain of putting your hand too close to the fire. It’s about the sever­i­ty of the pain, and it’s time-caused chron­ic pain. It’s clas­si­fied by the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain [as] pain that lasts for more than three months. And a huge pro­por­tion of peo­ple will suf­fer from chron­ic pain at some point in their lives, it’s about 40% of the population.

Evans: That’s astound­ing. So, three months after the ini­tial injury that caused the acute pain where that injury has healed or should have healed, pain car­ries on.

Lumb: Pain car­ries on. A process that was set up by that ini­tial acute pain – the dam­age, the injury – has set up changes in the brain, which means that the brain no longer reacts nor­mal­ly to pain. There is no nox­ious stim­u­lus, there is no injury, it can have resolved, but the indi­vid­ual might still be feel­ing ongo­ing pain, which could last for years.

Evans: So what’s going on there, then?

Lumb: Well, if you answered that ques­tion, you’d prob­a­bly win the Nobel Prize. We know that, when I say nox­ious stim­u­lus, this is an input from the body in response to an injury. [It] arrives in the spinal cord as its first point of con­tact. And then that infor­ma­tion is trans­mit­ted up to the brain. That ini­tial process, where­by the injury, the sig­nal from an injury, enters the spinal cord, begins to set up a process that we call sen­si­ti­sa­tion. And it’s that that can con­tin­ue once the injury has actu­al­ly resolved.

Evans: So the brain is actu­al­ly read­ing what’s hap­pened in the wrong way.

Lumb: In the wrong way. There are inter­est­ing par­al­lels – and I think this is an area that will become a focus of atten­tion – is that the way the brain learns, it has an expe­ri­ence and it then has an expec­ta­tion. So when the stim­u­lus arrives again, it expects to expe­ri­ence it in a par­tic­u­lar way. In most peo­ple, if there’s a mis­match between the stim­u­lus and what they expe­ri­ence, they resolve it, relearn it, they say, ‘Ah, so when this hap­pens, I now feel this. I don’t feel my pre­vi­ous expectation’.

Evans: Is that a pain cen­tre? If you could look inside my brain, my mind, and I’m in pain, where will that be?

Lumb: We don’t know. If one looks in imag­ing stud­ies in humans, for exam­ple, there is a net­work which clas­si­cal­ly lights up in painful sit­u­a­tions. But that same net­work lights up if you apply a nov­el stim­u­lus. So is it a pain matrix? Or is it a salience net­work? Is it some­thing that detects the unex­pect­ed? Pain is a huge­ly com­plex expe­ri­ence. It’s not just about the sen­so­ry expe­ri­ence is not just about ‘ouch’; it has emo­tion­al con­text, it trig­gers learn­ing and mem­o­ry, it trig­gers release of hor­mones, it makes changes in your blood pres­sure [and] of the heart rate, and it has an emo­tion­al con­text. One can map the pain path­way, for exam­ple, from the periph­ery, from the hand, let’s say, into the spinal cord up to the brain, it will go to the thal­a­mus, it will go to the somatosen­so­ry cor­tex. If you delete parts of the somatosen­so­ry cor­tex, you don’t remove pain, chron­ic pain. So as far as we know, there is no pain cen­tre. And it prob­a­bly relies on inter­ac­tion between dif­fer­ent cen­tres with­in the brain.

And con­text can change it so much. I mean, social con­text can change it so much. I mean, I’ve just put in an appli­ca­tion, for exam­ple, to actu­al­ly try and look at the mech­a­nisms that will under­lie social inter­ac­tions and relief from pain. Because if we can under­stand the mech­a­nisms for that, we can per­haps tap into that. I mean, it’s well recog­nised that pain can be alle­vi­at­ed by famil­iar con­tact with peo­ple. How does the brain do that? The brain’s got to be doing it.

Evans: Pro­fes­sor Brid­get Lumb. Well, famil­iar con­tact with peo­ple – social inter­ac­tion or lack of it – dur­ing the COVID-19 lock­down, could have seri­ous reper­cus­sions, men­tal and phys­i­cal. For those not just with chron­ic pain, but the pop­u­la­tion at large. Going back to an ear­li­er edi­tion of Air­ing Pain, num­ber 109, which is still avail­able to down­load along with all edi­tions from the Pain Con­cern web­site. We focused on the Euro­pean League against Rheumatism’s revised rec­om­men­da­tions for the man­age­ment of fibromyal­gia, and the role of exer­cise in the man­age­ment of all arthri­tis-relat­ed con­di­tions. In that edi­tion, we explored the walk with ease pro­gramme devel­oped by Ver­sus Arthri­tis, the Arthri­tis Foun­da­tion, and Aberdeen Uni­ver­si­ty. Just put ‘Walk with Ease UK’ into your search engine to find out more.

Now the ESCAPE-pain reha­bil­i­ta­tion pro­gramme is anoth­er UK-wide evi­dence-based pro­gramme for peo­ple affect­ed with osteoarthri­tis in the hips or knees. David Eas­t­on is a phys­io­ther­a­pist based in Cardi­gan in West Wales, work­ing for the Hywel Dda Uni­ver­si­ty Health Board, where he’s Clin­i­cal Cham­pi­on for ESCAPE-pain.

David Eas­t­on: So ESCAPE-pain is an acronym. It’s a bit of a mouth­ful, and it stands for enabling self-man­age­ment and cop­ing with arthrit­ic pain through exer­cise. It’s real­ly giv­ing peo­ple some knowl­edge and some skills about how best to adapt to the con­di­tion to min­imise the impact, enabling them to become more active, reduce [the impact of pain] and improve their qual­i­ty of life.

Evans: Well, the one thing about qual­i­ty of life and exer­cise is, we all know, at least I think I know, that exer­cise is good for me. But exer­cise is not thrash­ing your­self in the gym.

Eas­t­on: No, it’s not. And I think this is where a lot of peo­ple with chron­ic joint pain strug­gle. They some­times hear this advice and think, ‘Right, I’ll get all my ener­gies togeth­er, and I’m going to give it a go, and I’m going to try my hard­est’. But if you take that approach, peo­ple tend to over­do it too quick­ly, they won’t under­stand their cur­rent abil­i­ty and com­pare them­selves to how they used to be before the prob­lem. And what ESCAPE-pain does, is it gives them the oppor­tu­ni­ty to change that per­spec­tive and use exer­cise as a strat­e­gy to reduce their stiff­ness, improve their mobil­i­ty, and over time, improve their func­tion, and their over­all exer­cise tol­er­ance. It may not nec­es­sar­i­ly be to the lev­el that they used to be, or where they’d like it to be in an ide­al world, but it’s a bet­ter place. And there’s a real skill to be able to exer­cise when you’ve got per­sist­ing pain, and that takes time and prac­tice. When you use exer­cise as a as a strat­e­gy for joint pain. It’s about choos­ing when to do it, how much to do of it, and to keep it up on a fre­quent basis. It’s not always choos­ing to do it just because you feel like it. It’s know­ing how to do that and for me — cer­tain­ly, lis­ten­ing to peo­ple [about] how they have used exer­cise and the skills on the ESCAPE-pain pro­gramme – they learn how to use that effec­tive­ly, and that’s a process.

Evans: How do you get through to some­body who knows, ‘His­tor­i­cal­ly, exer­cise has hurt me’.

Eas­t­on: I think that’s what’s so great about the pro­gramme and why I’m a strong advo­cate. Because as a phys­io­ther­a­pist I meet a lot of peo­ple on a one-to-one basis, and I have these con­ver­sa­tions. And some­times I can see their face and [see] the screen come up and think, ‘Yeah, I haven’t real­ly reached them’. Some­times it takes a lit­tle bit of time. And it’s not always what I say or what I do, [rather] it’s the group envi­ron­ment, where peo­ple can see oth­er peo­ple com­ing at it from a dif­fer­ent per­spec­tive, and shar­ing that per­spec­tive, and think­ing, ‘Okay, well, maybe I’ll give it a go’, and learn­ing how to then, over the six weeks, refine that. So some­times they’ll come along quite well, and they’ll have neg­a­tive expe­ri­ence. But I don’t see that neg­a­tive expe­ri­ence in terms of an increase in their symp­toms as neg­a­tive. It’s actu­al­ly a learn­ing oppor­tu­ni­ty to think at the moment, that’s too much. So how can I do that differently?

Evans: I know you’re going to say it’s a suc­cess­ful scheme, but is it?

Eas­t­on: Why it’s become so promi­nent, and [why it’s become] a nation­al pro­gramme, and won an award with­in NHS Eng­land, is because the research base is very, very strong. It was a ran­domised con­trol tri­al that had 418 peo­ple, com­par­ing peo­ple with usu­al pri­ma­ry care and the ESCAPE-pain pro­gramme. And the out­comes were record­ed six months, twelve months, eigh­teen months and thir­ty months fol­low­ing the pro­gramme. And under those con­di­tions, they were able to demon­strate that there were sus­tained ben­e­fits for peo­ple that attend­ed the programme.

Evans: Phys­io­ther­a­pist David Eas­t­on, of Hywel Dda Uni­ver­si­ty Health Board. Well, whilst walk­ing in groups may be a great way of get­ting and enjoy­ing your dai­ly exer­cise, as we’re mak­ing this addi­tion of Air­ing Pain at the end of April 2020, dur­ing the COVID-19 lock­down, UK Gov­ern­ment guid­ance stip­u­lates just one form of exer­cise a day. For exam­ple, a run, walk or cycle, alone or with mem­bers of your house­hold. Now of course, all this will change, it may even have changed by the time you’re lis­ten­ing to this edi­tion of Air­ing Pain, so please do check with your own nation­al assem­bly or gov­ern­ment guide­lines. How­ev­er, whilst ESCAPE-pain’s 290-plus class pro­grammes around the UK are cur­rent­ly sus­pend­ed, there’s an online ver­sion and plen­ty of resources at escape-pain.org/escape-pain-online. The Walk with Ease pro­gramme, whilst it recog­nis­es that walk­ing can be done in groups and with com­pa­ny, it can also be done on your own. In fact, they’re cur­rent­ly pro­duc­ing an audio­book for peo­ple to lis­ten to as they walk. I’ll just remind you that whilst we in Pain Con­cern believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you and your cir­cum­stances and, there­fore, the appro­pri­ate action to take on your behalf. You can find all the resources to sup­port the man­age­ment of chron­ic pain includ­ing details or videos, leaflets, all edi­tions of Air­ing Pain, and Pain Mat­ters mag­a­zine, and the links men­tioned in this pro­gramme at painconcern.org.uk.

Well, I want to return to the sub­ject of fibromyal­gia to end this edi­tion of Air­ing Pain. Pro­fes­sor Clau­dia Som­mer tan­ta­lis­ing­ly left us with who might be of high­er risk of devel­op­ing fibromyal­gia. But I can’t leave with­out ask­ing the one ques­tion that peo­ple with the con­di­tion real­ly want asked. Will her research lead the way to bet­ter man­age­ment or even a cure for fibromyalgia?

Som­mer: At the moment? All this gives us is a bet­ter expla­na­tion why – the few drugs that we have for fibromyal­gia pain – why they work. Because these are drugs we use in neu­ro­path­ic pain, like amitripty­line, pre­ga­balin, dulox­e­tine. These are the drugs that have been shown to have some effect in the big clin­i­cal tri­als, and they come from neu­ro­path­ic pain. So, that fibromyal­gia has a neu­ro­path­ic com­po­nent https://painconcern.org.uk/airing-pain-109-fibromyalgia/ makes sense, when we know that these drugs that are used to treat neu­ro­path­ic pain also work to some extent, in fibromyal­gia. But the more impor­tant ques­tion would be, can we in some way reverse these find­ings? So can we make the nerve degen­er­a­tion stop or even induce regen­er­a­tion? Peo­ple are work­ing on it, and there might be drugs out in the next five to ten years.


Con­trib­u­tors:

  • Dr Clau­dia Som­mer, Pro­fes­sor of Neu­rol­o­gy at the Uni­ver­si­ty of Würzburg in Ger­many and Pres­i­dent-Elect of the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain
  • David Eas­t­on, Phys­io­ther­a­pist at the Hywel Dda Uni­ver­si­ty Health Board in West Wales
  • Dr Brid­get Lumb, Pro­fes­sor of Neu­ro­science at the Uni­ver­si­ty of Bristol
  • Dr Rachael Goober­man-Hill, Pro­fes­sor of Health and Anthro­pol­o­gy and Direc­tor of the Eliz­a­beth Black­well Insti­tute for Health Research at the Uni­ver­si­ty of Bristol.

More infor­ma­tion:


With thanks to:

  • The British Pain Soci­ety (BPS), who facil­i­tat­ed the inter­views at their Annu­al Sci­en­tif­ic Meet­ing in 2019 — britishpainsociety.org
  • The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain (IASP) iasp-pain.org.
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