Joan McParland is the Founder and now Treasurer of Hope 4 ME & Fibro Northern Ireland.
When people are very sick and suffering, especially for months and years, they are desperate to try almost anything to have even a little improvement in their quality of life.  This makes patients susceptible to shysters preying on desperation. Like the snake oil salesman of yesteryear, today we have their modern incantations and must contend with their psychological snake oil. For a short while, Joan McParland metaphorically drank the snake oil laced Kool-Aid. Joan had been very sick and bedbound for years with the neuroimmune illness myalgic encephalomyelitis - which literally means ‘inflammation of the brain and spinal cord’ - Joan was desperate to try anything so she could be well enough to the healthy Mom she used to be for her son, and return to the work she loved. Joan paid big money to participate in the ‘lightning process’, a program that professes to treat all sorts of chronic symptoms in just 3 days. Evidently this is not some benign distraction, it has been reported that a Norwegian teen tried to committ suicide after failling to improve from the lightning process. In the 3 day program, Joan and the other participants were told not to share anything about how the lightning process works with anyone else, or talk to each other about the lightning process, and to only talk about themselves in positive, healthy language and to tell people they were cured --- some people even had to sign contracts with those constraints. But Joan is not one to be complicit in promoting self-blaming brainwashing and is telling the truth about what secretly happens in the costly lightning process.  It works basically like this: you stand on a piece of paper that has ‘stop - I have a choice’ written on it. Then you say that aloud. Two arrows point to your choices. One arrow points to a piece of paper that has ‘the pit’ written on it. This represents your symptoms and illness. The other arrow points to a piece of paper that has ‘the life I want to lead’ written on it. You choose which piece of paper you want to stand on and say that aloud. That’s it -- you do that repeatedly and it will cure you. Doing a little bit of googling and it turns out both the British Advertising Standards and the Nordic Consumer Ombudsman have ruled against the lighting process for making false claims on its website.  It has been described as "quackery backed by pseudoscientific theory", and as a costly pyramid scheme since people who train in the process frequently go on to become paid practitioners themselves. What makes it really dangerous, is that dubious researchers have subjected children to the snake oil. It is unclear how the research ethics board allowed children to become guinea pigs, since the program was described as ‘"like CBT, but with bullying”. When Joan continued to be very sick, she realized she’d been conned. She told family and friends she was cured, but in reality she was just as sick and disabled as before. Joan felt used and abused -- and also ashamed and embarrassed for being so gullible to pay large sums for something so obviously rooted in magical thinking and profit making off the sick.  But Joan’s shame quickly turned to anger when she thought about how many other sick and disabled people were being scammed out of their money, and made to feel it was their fault if they weren’t cured -- and so Joan has set out to tell the truth so other patients don’t fall for the same scam.   SHOW NOTES: 0:08:00 Joan was an only child and born in Northern Ireland, near the border - a happy childhood with no trauma -- hated school initially but loved it by the time she finished - went to college, took a year off, and returned to college to study something she really wanted to: cookery and commercial course 0:09:00 The 2 courses compelemented one another and Joan got a job organizing school meals, so she had some hands on work creating meals, and admin work organizing supplies, making menus, working out nurtitional values, etc - so brain work and book work and hands on, which she loved as well - it was idyllic and only 10 minute drive from home - her son attended the same school - they got all of July and August off each year 0:10:00 Joan married her first love, her love at first sight, when she was 20 - they camped, caravan, and biking - Joan often had a car full of kids from school because they would end up at her house - Joan was asked by a woman to look after her son on a long term basis, so the 2 boys became like brothers - it was a good life, really good - and then 'boom' 0:11:00 Boom' happened October 13th 1999, she got sick overnight - looking back now that Joan knows what ME is (myalgic encephalomyelitis), there was a time in France when her brain 'blipped' and she thought she was going to faint and scared the life of her for a couple of hours, 'what the hell was that' - that was summer 1999, and about 6 weeks later, 'boom' 0:12:00 Working with kids in school she would pick up a tummy bug / gastroenteritis - on waking October 13th, Joan thought she had a tummy bug or food poisoining - she tried to get out of bed but couldn't walk, the room was spinning, her brain was spinning inside her head, the nausea was horrific, and Joan had to crawl on her hands and knees to the bathroom - desperately wanting to vomit and not able to 0:13:00 She called head office to say she was sick and would be off work one or two days at the most - 2 days passed, a week passed, 2 weeks passed and Joan realized something was not right - Joan's Mom was staying with her to take care of her - her GP made a house call and diagnosed Joan with viral labyrinthitis (inner ear infection) as causing the dizziness and nausea 0:14:00 Joan was so ill, she couldn't explain her symptoms - she didn't realize she was sicker when the curtains were open or when her mother was vacuuming - in the same way a year later, when she couldn't associate pushing herself physically that was making her sicker 0:15:00 For 11 months, Joan was carried to the bathroom, looked like she was going to die, felt like she was going to die, lost about 2 stones (28 pouinds) in weight because she couldn't eat - her husband carried her to the car and drove her to the doctor and he injected Joan with cyclizine (nausea medication) - she was injected for months and months - one day another doctor said Joan didn't have to come in for injections, she could get it in tablet form - Joan wish she'd known that because it was crucifying her to travel to and fro the doctors - one day Joan felt a wee bit better 0:16:00 Joan thought she was recovering - she got a wee bit better over the next few months, but the dizziness and nausea never left, but her energy came back a bit - Joan was afraid of losing her job so went back to work about a year after she got sick - but Joan wasn't really well enough to work 0:17:00 Joan would last until about 1pm and then she'd have to come home and go to bed until the next morning - she did this for months, never associating that pushing herself to work was making her sick, that's a concept she'd never heard of - so Joan was in a cycle of 'work and collapse' - she ended up back in bed for a few months and tried to work again - this went on for about 2 years - a friend at work suggested Joan try yoga, Joan said that was a good idea, she needed more exercise (laughter) 0:18:00 Joan went to the yoga class and can remember thinking 'I can hardly lift my leg, what's wrong?' --The next morning she went to work and 10 minutes after getting to work she fell to the floor, and spent the next 7 years in bed - the 2 years of pushing and crashing cost Joan the next 7 years, a very steep price 0:19:00 Joan can remember her doctor standing at the foot of her bed saying 'I hope and pray we're not dealing with severe ME' - but he never said anything about the importance of rest - she said to him one day she couldn't get out of bed, but she wanted to, she wanted to spend time with her son Stephen, she wanted to work - he casually said 'stay in bed if that helps' - Joan says that if the doctor had of said 'Joan, if you don't rest now, this could be the rest of your life' - but he didn't know to say that, so she doesn't blame him, he was very good to Joan - he started sending Joan to specialists, like cardiology, gastroenterology, etc 0:20:00 The specialists were all coming up with different diagnosis, like menopause - Joan says its the strangest menopause she ever heard that would put you in bed for a year - Joan's husband said we're running out of options with the National Health Service (NHS), maybe they should try a private clinic and pay out of pocket - one gastroenterologist said to Joan's husband, 'take that woman to a psychiatrist' - that was the only day in 20 years that he doubted Joan, he said 'Joan, there is something I have to tell you, these doctors can't all be wrong' - that nearly broke Joan's heart, it felt like betrayal 0:21:00 Fortunately her husband knew her well enough to believe her, and now he backs ME advocacy as much as Joan does - right now he's building some stuff for Joan's ME presentation next week - she doens't know where she'd be without him, she realizes she's very lucky - their son was 12 years old when Joan got sick, so he's been to all the ME conferences Joan has attended - without her family she could not accomplish her ME advocacy, because living with ME is horrific 0:22:00 At one point Joan doubted her own sanity because all these doctors were telling her there was nothing wrong with her - so she went to a psychiatrist and he told her he would teach her to relax and not think about her bodily sensations so much (laughs), so I didn't go back to him either - Joan says 'to be honest, it was the Lightning Process that gave her mojo, she came out of that not to be empowered to be well, but to be empowered to do something about the ME medical situation' 0:23:00 In about 2007 Joan tried the Lightning Process (LP) - Joan had a relative who is a mental health nurse, a lovely lade, and she sent Joan a newspaper clipping of this wonderful new treatment for ME 0:24:00 The article said that LP had helped people get out of wheelchairs - there was an organization called the Northern Ireland ME Association and they did a newsletter and including an article about a lady bouncing out of her wheelchair in 3 days - at first Joan scoffed, but then she thought 'what if it helps?' - she was so sick couldn't not try it 0:25:00 The LP person was to phone patients to determine if they were suitable for the program, so what that means is 'are you stupid?' (laughs) - he would talk about the ME symptoms like a person with ME, he talked about the dizziness and nausea and exhaustion, etc - Joan really beleived he knew what he was talking about - he (the LP person) then started asking Joan questions like 'how much do you want to be well, how much do you want it, are you willing to invest 3 days of your life now to get well' - questions you are never going to say 'no' to 0:26:00 He was obviously an insurance salesman at some stage in his life because he could have sold anything to you - Joan says she's not stupid, but she was desperate, and he was preying on that - he said Joan needed to make it a life changing holiday - she went and stayed in a hotel about an hour and half from her home - Joan's mom came with her because Joan was too sick to be on her own 0:27:00 So they stayed in the hotel for 3 nights and had to take a taxi about 5 minutes away to a house he rented for the LP - it was supposed to be for 3 days, but it was actually only from 10am to 2pm on 2 days, and the 3rd it finished at noon, so 10 hours in total - for lunch they were served a cup of tea and a biscuit....for 880 pounds (about $1150 USD) 0:28:00 They were told not to talk to each other about what happened in the room, don't discuss it - Joan got to know 1 of the other 3 people, Paula, and they became friends over time, and great friends today 0:29:00 About a year later Paula told Joan it was her 3rd time doing LP and her husband paid the LP person to come over for personal 'training' at 1,000 - 2,000 pounds, they were so desperate - it took Paula a year to tell Joan because she was so ashamed she'd been conned repeatedly - the LP person told Joan to only ever talk in positive terms and words 0:30:00 So Joan and Paula would have these stupid conversations only in positive terms, partially out of fear, partially because they had paid so much money - but as time went on, their health went down, and they had to admit to each other that LP is a load of crap, just mind games - it mostly just LP person talking 0:31:00 He would show things like optical illusions and it all made sense the way he said it - on the 2nd day he showed them how to do LP - that's when they started to learn affirmations - he instructed them to think of a day in the past they were happy, and bring that emotion into the present - it was like 'neuro linguistic programming' - its just brainwashing 0:32:00 Joan would go back to her hotel pumped with adrenaline - she had pieces of paper she was to put on the floor and practice LP all night - her Mom watched her standing on paper circles talking like she was cured - Joan was instructed to only speak in positive terms, so she called her husband and told him she was cured (laughs) - one of the pieces of paper says 'stop - you have a choice' - another piece of paper said 'the pit of ME' and another said 'life I want to lead', and Joan was instructed to choose one to stand on 0:33:00 Of course, people choose 'life' and stand on that piece of paper - you become your own coach - and you have to do all the movements (Joan thrusts her fist in the air in victory) and say 'I choose the life I love' (laughs) 0:34:00 When your experience symptoms, Joan was instructed to put her hands in front of her and say 'stop' - nobody was going to choose 'the pit of ME' 0:35:00 It would be ridiculous to say to someone they could be cured of cancer by standing on a piece of paper and shouting 'stop' - but because medicine has erroneously said ME is psychological, they can get away with it - they are playing on the fact there is no biomarker for ME yet, so when you can't prove a disease, it can be called anything 0:36:00 Of the 3 people who did LP with Joan, none of them recovered - one of them had ME, another depression, and another fibromyalgia - Joan practiced the self-affirmations daily and almost became evangelical about it 0:37:00 If any one had of said to Joan at the time that LP was a load of crap, she would have argued that it wasn't - the LP person phoned and asked the patients if they would go on tv or radio to tell about their experience - if he had of phoned Joan a week earlier then he did, she would've gone on tv to say how great LP was, he was like the Messiah to Joan - Joan was so desperate to better after years of being sick, she believed it 0:38:00 Joan stopped believing when her ME symtpoms started to creep back - in her head she was screaming 'no' - she did the LP and was torturing herself - but a small voice in her head kept saying LP was rubbish - so her mind was bouncing between reality and LP 0:39:00 Eventually Joan ended up bed bound again - and feeling psycholigically disturbed about how foolish she'd been, having been taken in, and telling everybody she was cured - Joan felt stupid and used and abused 0:40:00 Joan felt ashamed for being so stupid - so psychologically Joan ended up in a worse place 0:41:00 When Joan's friend finally disclosed that she was still sick, Joan was shocked and at the same time understood her desperation - since none of the 4 people recovered, Joan knew she would never do LP again and the reality "I've just been conned" started to set in - Joan only has about 20-30% of ability compared to her full health - if she's not horizontal most of the day, nothing gets accomplished - it was psychologically tough because LP felt like the last hope 0:42:00 Joan had lots of tears, heartbreak, disappointment - it was a horrible experience - Joan didn't go into depression, it was great sadness - then that sadness turned to anger, 'I've got to do something about this' - people can not go on abusing and make fools of patients - a match was lit inside Joan to do something, she didn't know yet what it was 0:43:00 The support of her husband and wanting to support her son motivated Joan - she doesn't know how people with severe ME survice on their own without some family support 0:44:00 The one thing that kept Joan sane during the years she was very sick, was a tree outside her window and she watched the seasons change - there were days when she felt like she was going to die, couldn't get out of bed, and sometimes she just counted the leaves on the tree because she couldn't read or watch tv - anything to take her mind off the suffering because she couldn't physically leave the bed - everytime her son walked down the hall, Joan thought 'better me, than him'. 0:45:00 Joan couldn't make sense of the written word due to cognitive impairment - it was like a switch in here brain was turned off - Joan can remember looking at a 4 week menu plan for work and not being able to come up with one meal plan 0:46:00 Joan wondered what was happening to her brain, she couldn't think straight or get her thoughts into order - affecting her concentration, memory, ability to focus - when she could tolerate tv, she couldn't follow the story line 0:47:00 Joan would try to fake that she knew what the tv show was about - if the radio is on and her husband says something to her, it all gets jumbled - her brain can't filter out what she doesn't want to focus on - when Joan is feeling 'well' she can go out for a meal as along as there is no background music and only 1 or 2 other people there 0:48:00 If people talk across each other, Joan is cognitively impacted and she doesn't have a clue what people are talking about - Joan has used her anger toward ME advocacy - Joan didn't even have a laptop until about 10 years into being sick, she had no contact with the outside world - she had to self learn the laptop when she got it 0:49:00 Joan and her husband where scheming how to doing something about ME - they heard about a ME support group about 20 miles away...that was a whole different experience - Joan could barely sit up at that point but the group was talking about the activities they were planning for the weekend - Joan thought she must've been in the wrong support group because she can't do any of those things - she was despondent 0:50:00 But Joan and her husband decided to start their own ME support group - Joan contacted the local newspaper and they did an article about Joan and ME - Joan booked a room at a hotel for the meeting - Joan didn't know what to expect, or if any one would actually show up...then they started coming and she thought they'd never stop coming through the door - Joan wasn't a public speaker or know what direction the group would go, they hadn't even paid for the room, but everyone put in 1 pound to pay for it 0:51:00 So Joan just spoke from her heart, about what had happened to her - she said she needed help and they formed a committee that night - and the next thing she knows they're organizing conferences and bringing over researchers from Harvard, Stanford - it was like the stars lined up and everything fell into place with very little effort, but sometimes with a massive effort - sometimes she felt like running away from it but then an opportunity awareness and educatin would come and she could not let it pass - and the group grew and grew 0:52:00 Joan says the only thing she did was to tell the truth, she's not a doctor or scientist, she's just one person who got ME and is not going to leave this world quietly - doors started opening 0:53:00 This year in particular, they've been asked to do a presentation in the GPs surgery (clinic), that is massive - last week Joan was asked to talk to the European Health Connection - Joan realizes instead of her having to ask people to learn and hear about ME, now they're coming to Joan's group 0:54:00 LP didn't take off too much in Northern Ireland, or people are too ashamed to admit it, which Joan can understand - there is zero ME research in North Ireland - advocates had been trying for years to get services but hadn't got any where 0:55:00 One day Joan got a call from Horace Reid (SPELLING??) from the Northern Ireland ME Association to tell her she was doing a great job and keep up the good work, and that was a real boost for Joan - Horace ended up joining Joan's group's committee and has been a great friend, advisor, and advocate 0:56:00 Soon Joan and other advocates met with Health and Social Care Board - Joan was frightened and just listened - they kept meeting with them but nothing happened - they then asked the Patient Client Council to help them 0:57:00 They are supposed to represent the patient voice - they started to come to the meetings with the Board and hold them more accountable - that's when people started to listen and things started to change, that was in 2012 -- in 2018, the Chief Medical Officer for Northern Ireland opened the conference and it was announced a new ME Clinical Lead for NI was being interviewed for the new ME clinic - but the clinic hasn't opened yet, it it was left to patients it would've been started by now 0:58:00 They are just waiting for the press release to announce the new clinic - it is exciting but the down side is only it is only a part time position and no supports for kids, so a long way to go yet - doctors are now referring them to the support group because there is no other place to refer, and they will get the best support from other patients 0:59:00 Joan has to spend a lot of time horizontal, drapes and windows closed, phone off, don't any body think of coming into the room, so not just lay down, but complete shut down - Joan has tried antivirals and antiretrovirals (ARVs) - another friend started ARVs first and she got good results, not cured, but she was severe and now she's at moderate / severe 1:00:00 So it improved her health one level and she's holding that - ARVs are expensive, maybe about 300 pounds a month - Joan tried ARVs but started to feel worse 1:01:00 Joan persisted taking them until one day she was having trouble breathing so stopped them, but tried them again about 6 months later but had the same reaction - but that didn't bother her as much as the LP because it didn't mess with her head 1:02:00 Joan's illness impacted her son - he was just moving up from primary to high school when Joan got sick and it affected him 1:03:00 Knowing how ME was impacting her son, motivated Joan to fight on - it made Joan very angry she couldn't protect her child from pain, that's a big reason she got into advocacy - no kid needs to see there mother in bed like a vegetable 1:04:00 Joan doesn't know how parents with kids with ME cope - if Joan's son had ME, she would've murdered somebody in health service by now 1:05:00 Joan's support group has parents of children with ME, but they have to keep a low profile for fear of having health services accuse them of 'fabricating illness' in their child - they have to play along with mental health services, not cause a fuss, don't fight too hard - Joan hopes once the adult ME services are running, those parents will have an easier time - but they are scared 1:06:00 It happens more often in England, but a few parents in Northern Ireland have come close to having their sick child taken away from them 1:07:00 Joan doesn't want to take away people's hope, but she also doesn't want them to go through what she did with LP, the false hope - Joan says to put yourself in the place of someone who had cancer and ask yourself, 'would I do LP for cancer?' - ME is a physical disease and can't be cured with psychological tricks 1:08:00 You've got a physical disease that nobody can see on an x-ray or a blood test, but it is there and it cannot be talked out of your body   Be a podcast patron Support Medical Error Interviews on Patreon by becoming a Patron for $2 / month for audio versions.  Premium Patrons get access to video versions of podcasts for $5 / month.   Be my Guest I am always looking for guests to share their medical error experiences so we help bring awareness and make patients safer. If you are a survivor, a victim’s surviving family member, a health care worker, advocate, researcher or policy maker and you would like to share your experiences, please send me an email with a brief description:  RemediesPodcast@gmail.com    Need a Counsellor? Like me, many of my clients at Remedies Counseling have experienced the often devastating effects of medical error. If you need a counsellor for your experience with medical error, or living with a chronic illness(es), I offer online video counseling appointments. **For my health and life balance, I limit my number of counseling clients.**  Email me to learn more or book an appointment:  RemediesOnlineCounseling@gmail.com    Scott Simpson:  Counsellor + Patient Advocate + (former) Triathlete I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard. I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships. Thanks to research and access to medications, HIV is not a problem in my life. I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.   Counseling / Research I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.  Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.   Patient Advocacy I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network. I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada. Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system. My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.  
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Creator Details

Location
Newry, Northern Ireland, United Kingdom
Episode Count
1
Podcast Count
1
Total Airtime
1 hour, 9 minutes
PCID
Podchaser Creator ID logo 813182