Have you been misled…? // What is PACE? // Medical Scandal [CC]

Have you been misled…? // What is PACE? // Medical Scandal [CC]


Hello, friends. Today, I feel super, super pants as evidenced by my lying on the floor. Here we are. Don’t worry about my wrist splints, though; that’s just because I flattened my hair and I’m apparently such a delicate little flower that that then requires the help of wrist splints. Since I’m floorbound today, it’ll be working from the floor. It’s given me an idea to talk about some more disability/illness-related stuff. I do have a playlist for all of my disability-related videos, by the way. If you want to see that, that’s up above in the card. I thought that I would talk to you about PACE. “What on Earth is that?” I hear you ask. Well, my friends, it’s basically the worst thing to ever happen to the ME/Chronic Fatigue Syndrome community. It’s bad science and it was all lies. I made a video back in Vlogmas time about “What is Chronic Fatigue?” And I talked then about how I was diagnosed with Chronic Fatigue Syndrome or, failed to say this… Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome, is a very controversial and poorly understood disease. It affects 250,000 people in the UK and about a million people in America. Worldwide, it’s estimated that it affects 30 million people. People with ME experience a dramatic decrease in their stamina for ordinary physical and cognitive activities. There’s a characteristic dramatic increase in symptoms after minimal physical or cognitive exertion. The myriad of symptoms also include sleep dysfunction, orthostatic intolerance (that’s basically your blood pressure), and cognitive dysfunction, as well as pain and fatigue. Most people with ME cannot work and 25% are confined to their beds or their homes. I am just above that group, in that I am not always confined to my house. And now I’m not 100% with being diagnosed with that for reasons I am about to get into. Basically, I have different doctors who say different things. Doctors, what’re you gonna do? They only care about their own speciality. Anyway, when I was seventeen, I was diagnosed with ME. Though I had various other medical issues going on at the time but it was decided that I also had ME even though the symptoms overlapped with other symptoms from disabilities that I was born with. I was then added to the list at the ME Clinic in Bristol which was ME/with something else. Can’t remember what else. Was it MS? ‘Cause that’s really random. Like, ME and MS. They are not the same thing. Anyway. I think it was an ME and MS clinic and, as part of that, I had to go to various “therapy” -type things where I would go and talk to someone; they would ask me about my levels of energy; how I’d been doing and I had to fill in a chart every week using different colours – that was fun. I’ll be honest, that was fun. I had to colour in how much energy I had used in a day. Filling in the chart took quite a bit of energy, to be fair. So I had to fill in a little chart to see how much energy I was using. And the intention was, after I had filled in this chart for quite a while, I would then begin a process of steadily increasing my exercise with a view to this making me better. At the time, any energy output at all – even eating, because then you have to digest – had a very heavy load on my body and I then, after eating food, could not really move for about three hours. I just had to lie there while my body used its precious energy resources to digest my food to give me a little bit more energy to maybe last a few hours until I then had to go through the process again. So worth it. Most people who are diagnosed with ME/CFS (yeah, the name – there’s some controversy, that’s why it’s called ME/CFS) (That’s a different video!) (Yeah, go back to my Chronic Fatigue video – that will tell you all about that) Most people who have been diagnosed with ME or CFS will have been told two things by their doctor: Number one: that they need to exercise and number two: that they should go and see a psychotherapist. So, number one I already told about: I had to do some graded exercise and I had to fill in some charts although that didn’t really get me anywhere. The whole idea that ME or any of the things that I’ve been diagnosed with were in somehow psychosomatic which means that because you think they are true in your mind, your body then makes it happen. Well, it just irks me. It just really, really irks me. As I suppose it would when you’re dealing with something and you’re like, “Um… my arm is paralysed” (which is a thing that happens to me sometimes because I have a nerve disability, whatever) Because I have a genetic disability that affects my nerves, most doctors are like, “Ah!” “Mmkay, well it’s just to do with that. Give it some time.” “It will probably get better.” But, due to the fact that I had been part of the ME Clinic, I then started to get another group of doctors who, if I had a problem with my arm, for example, would say, “Oh! That’s just in your head.” Obviously, it’s a very undercutting thing. Thing is, I battled so hard– Sorry, I don’t really like using the rhetoric of “battling” or “fighting” a disability or condition, because I think your body works best with it when you attempt to live in harmony. I work very hard to accept my disabilities and deal with them as best I can. To not let them stop me from doing things. And then to have someone come in and say, “Oh, but it’s all in your head anyway” “You made that happen” “You don’t need to be doing that work” Ooo… Gosh, that irks me. That irks me. If I was not a pacifist, I think I’d use a stronger word than “irks” but I am, and I’m a Quaker, so I have to deal with it. You say bad things to us, we just crush it in a little ball and then we put it down here. That’s not entirely true. It’s fine. Anyway, due to this new group of doctors in my life, I at one point got locked in a psychiatric unit. That was also tied up with food things, because they thought that I was anorexic because I was a teenage girl and I was underweight due to my disability that affects my digestive system. But sure, sure, could be your thing, too. I mean, it wasn’t, but it could be your thing, too. Even though I’ve been disapproven, but…it could be your thing, too. I don’t really remember everything that happened because I was too ill at the time, but, suffice to say, it wasn’t the best time of my life. Fortunately I was able to get out, because one day I accidentally crushed my arm and then they had to let me out to go to the main bit of the hospital, to get my arm seen to, and then I was like, “Ha-ha! I am never going back.” “I’m gone. Bye-bye.” Day I escaped the psych ward. The reason that I was recommended to have exercise and psychotherapy was due to a trial called the… Otherwise known as PACE. It was a large scale trial of treatments for people who have ME/CFS. For the purposes of the trial, all of the participants were split into four groups. They all received basic medical attention, but one group was given Graded Exercise Therapy called GET; one was given Cognitive Behavioural Therapy, which is a thing to do with your mind; and one was given Adaptive Pacing Therapy, which is all about thinking ahead, what you’re going to do, not doing too much; and then the fourth group was just given standard medicalised care, that was it. The PACE study “proved” that after Cognitive Behavioural Therapy or Graded Exercise Therapy, you will have a 60% chance of getting better and a 20% chance of recovering entirely! The only problem is…that you won’t. Although the trial became the foundation blocks of government guidelines and medical guidelines for ME and CFS treatment, it was deeply flawed as I am about to explain to you. The results are, at best, unreliable and, at worst, manipulated to produce a positive result. Although many doctors at first went along with the results of the trial, patients cried out that, actually, this really wasn’t that great because they’re being sold a lie that talk therapy and exercise can cure ME/CFS but then their own experiences proved very, very different. When the trial first came out, it made headlines around the world. The Independent newspaper reported, “‘Got ME? Just get out and exercise,’ say scientists” Actual headline. Actual headline. But patients were very skeptical because the results contradict the fundamental experience of having ME in that any kind of exercise just makes everything so much worse. I am far, far better than I was ten years ago when I was first diagnosed and I put that down to just knowing my limits. Managing myself much better. Now I know that if I do something; if I have a day out that I’m gonna be in bed for a few days afterwards and I try, as best I can, not to struggle with that. But the best way I think mentally to cope with that – at least for me, and maybe it works for you – is to set yourself a little goal. So, if I go to London for an afternoon to go to some kind of…I don’t know, work meeting or hospital appointment or something, I know that the next day I’m probably going to be incredibly useless So, I give myself the task of doing one Instagram post that day. That sounds really minor, I am sure. But it’s not! But I achieve it, generally, and that makes me feel really great about myself. What does not make me feel great about myself is doing a little bit of exercise, feeling bad, and then someone telling me I should do more. After the trial was released and publicized, so many patients disagreed with what it said and fought to try and find out what had actually happened. One patient from Australia managed to win a Freedom of Information tribunal and gain access to the trial data. I don’t know why I had to say that in that way. “Trial data.” It was discovered that the PACE authors had altered the way in which they measured improvement and recovery to increase the apparent benefits of their therapies. Most notably were the changes in criteria for effectiveness and recovery. Also bear in mind that the patients are generally scoring themselves. How improved they feel; how much they feel they’re able to cope with their day et cetera, et cetera Most notably, at the very start of the trial, all participants filled out an SF36 which is a short-form health study with thirty-six questions (didn’t see that one coming) that assesses health-related quality of life. A score of zero represents complete disability and a score of 100 represents no disability at all. So the things that are assessed in this are: limitation of social activities because of physical or emotional problems, bodily pain, and limitations in usual role activities. Vitality, energy and fatigue, that sort of thing. At the very start of the trial, the scientists said that to even enter the trial, a patient had to have a score of 65 on this scale, or below, in order to be classified as having bad enough ME/CFS that they were able to join the trial Half-way through the trial, however, they changed their idea of what “normal” was and normal now began at 60. So even though 65 had previously been the number that was, you know, the highest, if you were 65, you just about fit into the trial but now suddenly if you were 60, you were better? To put this into some context, the average age of participants in the study was 39. A “normal” thirty-nine-year-old should score about 93 on this and again, the new normal on this trial was now 60. Despite the fact that the score of 60 is close to the mean physical function score, which is 57, of patients with class 2 coronary heart failure. I mean, sure, you’re dying of heart disease, but according to the ME study, you’re fine. Other thresholds were also changed. Another issue with the trial, of course, is the use of subjective main outcome measures. People were marking themselves on how they were feeling, whether they felt any better; whether they felt any worse. Since patients obviously knew where they go to Cognitive Behavioural Therapy, or Graded Exercise Therapy, and were told that if they had this, there was nothing to stop them from getting better, it kind of stands to reason that when later asked to grade themselves, they very hopefully said that they were feeling lots better now! Even if they actually weren’t. Why is this so terrible? Well. One of the reasons is that the PACE trial showed that there was no problem with having Graded Exericse Therapy for ME patients. Might help them get better or, you know, they might just continue along. Everything will be fine. In contrast, a survey conducted by the ME Association in 2012 showed that 74% of patients had their symptoms worsen after a course of Graded Exercise Therapy. Just 74%, I mean. It’s fine. It’s just making people a whole lot worse. Critics of the study have therefore questioned whether people taking part in the study in the Graded Exercise Therapy group actually increased their levels of activity enough to see these negative effects. Before the trial, all participants had a step fitness test and at the end of the trial, they all had a step fitness test and they largely had not improved. Which, if people had been doing Graded Exercise Therapy for a long time, probably should’ve improved. Leading us to possibly conclude, that they didn’t actually do that much activity. Once the data was released by the Freedom of Informaton Act, different scientists re-analysed it and the improvement rate fell from 60%, with 21% becoming totally recovered, to just an improvement rate of 22% and only 7% actually recovering. And even that rate of 21% improving after receiving Cognitive Behavioural Therapy and Graded Exercise Therapy might be misleading because of the group that received only standard medical care, 10% improved. This suggests that 10% of all of the groups would’ve improved without receiving any therapy or exercise and thus there’s only 10% that were actually helped. Which is not to say that if you have 100 people with ME exercise therapy helps 10% of them that it’s not a great thing. That’s wonderful. But the fact is that it’s also going to harm 74% according to the ME Association trial. So maybe that’s not a great thing just to be putting in your medical guidelines. Throwing out there; telling everyone they have to do. Conflicts of interest were also highlighted I’m just doing this with my fingers because I think it makes me look slightly evil. The PACE [?] investigators also acted as consultants for large insurance companies and one of the main professors, Professor White, had also worked as an advisor to the Department of Work and Pensions, their main funder of the PACE trial, with a special interest in reducing social security benefits to people with ME or CFS. Despite these many serious concerns about the PACE trial, it continues to be used by UK government agencies such as the NHS and the National Institute for Clinical Care and Excellence (NICE). Considering that recently immunologists have found clear patterns in the immune systems of people who have ME or CFS, and physiologists have reported seeing some very unusual physiological changes post-exercise in people who have ME/ CFS, I think it’s safe to say that there’s something else going on. That a little bit of exercise and a little bit of talking probably isn’t going to cure the problem. But one thing this study is is a great excuse not spend money researching a disease of some description that is a little obscure and difficult to find out what’s actually happening and will probably require a lot of money. I’m gonna leave a link in the description down below to a blog post by Jenny, who blogs as tipsform, about an experience she had going to the hospital and, because she has a diagnosis of ME/Chronic Fatigue Syndrome, she wasn’t given the care and attention and really what was going wrong with her wasn’t looked into because her diagnosis is something that is classified as psychosomatic. This is similar to many medical things that have happened to me in the past where I’ve been to A&E and when they find out that I have a condition that affects some part of me, they’re like, “Oh, well, it’s probably that, it’s fine.” Even when it’s really not and it’s something else, like that time that I had kidney stones and she didn’t believe me – until the kidney stones came out. The knock-on effect of PACE is that patients who have been diagnosed with ME and CFS are less likely to receive adequate medical tests and treatment, even for new symptoms that don’t fall within the boundaries of ME. Tilly! That’s not helpful. I really just wanted to make this video to share with you a little bit about what PACE is in case you’ve come across it/heard of it and especially if you haven’t because I think sometimes it is really important to know what’s behind doctor’s actions. Obviously, every single doctor out there is trying their hardest to help everyone they can. They wouldn’t have gone into medicine otherwise. Things like this trial can be very misleading for doctors who are just trying to do their job and they can’t always be aware the specifics, full medical background and history of every condition. Mainly what they see is just the guidelines that they’re handed from the government and if the government are mislead by trials such as this then it’s gonna have a knock-on effect. The best thing you can do to help is just to talk about it. Tweet about it. Write a blog post about it. Look into it yourself and see what you think. Let me know in the comments down below if you or someone that you love has ME and have ever been affected by the PACE trial when it comes to seeking medical attention. Let me know, as well, if someone has pressured you into taking exercise and then you just felt really, really horrible or if you’ve had to go to therapy even though you don’t really need therapy. I hope you’ve enjoyed this video, even though it hasn’t been the cheeriest one I’ve ever made. I do have other cheery videos, I promise, on my channel if you are new and you’ve not seen any others. Go and see those. Bye-bye for now, my loves, and I shall see you in the next video.

100 Comments

  • L B says:

    Interesting information well explained. I find your videos very positive and find your openness refreshing. I watched your previous CFS video and I would be interested in the exercise routine you mentioned, a bed based routine would be very helpful due to dizziness. Thank you.

  • Amy McRae says:

    Even worse than I was aware of! One thing that irks me to no end is that POTS patients are unilaterally recommended exercise therapy when many of them have POTS secondary to ME/CFS (diagnosed or undiagnosed)! It’s been a struggle and a half to be told I just need to exercise when I knew that what I needed was pacing and assistive devices to minimize my energy expenditure.

  • SolidGold says:

    In this video, you reminded me of Frida Kahlo. For real. The Hair, the "bed like" floor, the strong voice 🙂

  • thunderstrike2525 odinson says:

    How were you disguise Jessica if I might ask please

  • thunderstrike2525 odinson says:

    I totally agree with you Jessica on pace your video is very important on impact I thankyou

  • Mike Baker says:

    This kind of nonsense in many areas of medical theory is very common. It's why I only deal with doctors who have the capacity to acknowledge their own limits to me and clearly communicate the boundaries of proven medical knowledge on any given topic.

  • Dan Avangard says:

    your content is so interesting to me, even if I am not suffering from any kind of chronic illness. English is my third language and your British accent sometimes makes it harder for me to keep up with your speaking. but I'm trying because it's worth it. thank you for a quality content on Youtube!

  • Trivvy Triv says:

    I don't have ME. However I recognize the pattern of being silenced with "Exercise! Salad! Why don't you try Hormones?!"… It took me about 15 years of searching on my own to finally confront an gastroenterologist with my self found diagnosis. He sceptically looked at me and told me to…DO MORE EXERCISE. But he agreed to look into it and his face when he saw the results. My liver has been damaged years ago and nobody took me serious. It was always "female problems" to them. People! Don't you ever get silenced by doctors! You and only you know when and how something is off with your body!!

  • Miara Avalin says:

    Thank you so much for making this video. I have been working hard to get my energy levels back after a round in the hospital a couple of years back now. I am having a hard time explaining to my doctor that while the exercise I’ve been doing makes me less winded I feel just as low in energy after physical exercise and social interaction. I have also attempted to just listen to my body and know my limits and when I can do that I feel much better. Does anyone have any ideas of how to phrase this to any doctor?

    By back I mean to the not very high levels they where before I went to hospital. I wasn’t well before then but after I feel a bit like a battery that has gone dead and trying to charge it is difficult

  • Lepol Hart says:

    You summed up the PACE trial really well as a way of making out that ME/CFS sufferers were not suffering with a terrible disease and just needed exercise and behaviour therapy to cure it. This was all done to save money on paying for proper treatments. It's disgusting the way our government have treated disabled people just to cut costs on benefits.

  • birchbeerqueer says:

    ive got chronic pain, and the worst part of being told its all in my head is that i KNOW its not true, but because a doctor will say it so confidently i think to myself, IS it my fault??? (as though mental conditions are anyone's fault anyhow, but our society treats them like it is). it feels like the doctor is abdicating responsibility and fixing the problem is entirely up to me, and because of that i have to do it alone. it's a very isolating experience to be told it's all in your head.

    youre such an inspiration, jessica! i've never made a video about my disabilities/experiences with them, but now i'm thinking that i should.

    <3

  • Karen says:

    I really love when you talk about disabilities on your videos! I don't have to deal with something that big, but I've been dealing with severe depression and anxiety my whole life, and I've always heard that "it's all in my head". Well, of course it is, it's a mental illness!! It's not my fault, I'm doing the best I can with what I have. I've had some psychosomatic symptoms and it is always terrible, and even when the rest of my body is doing okay, my brain is still ill. I'm really grateful that someone as awesome as you exists and is sharing with us your very positive views about living with a disability 💜

  • Daily Drama says:

    Dear Jessica, LOVE your videos……they keep me going on days when I think I no longer can, so thank you. I have Stage III Chronic Neuro-lyme disease. Sadly, something my government (U.S.A.) denies and your government follows our "rules" such as they are for treatment. We, the Lyme community are making headway, albeit at a snails pace, in research and information. My pain level on a daily basis is compared to that of someone waking up from open-heart surgery! Yet we are denied almost all pain meds due to the fact that "it's all in our heads."
    I was forced to move due to a d.v. issue and therefore had to find a few new doctors…ugh! This last one thought "physical therapy," as in lifting 15 to 30 pound weights and stretching would help my nerve damaged body. It has literally laid me flat on my back for 2 months now with only a few weeks left of therapy. And NO, it did not help, just made the little spirochetes eating my body really, really, ticked-off.
    I have also been diagnosed with Epstein-barr, but according to the yahoos up here in the back woods of Maine, I should be fine by now!
    Sadly, I have had the same experience with doctors writing things into notes and before I even get into the doctors office, they already have preconceived notions about my "fake"conditions. With more than 365,000 in the United States getting infected, a suicide rate that is more than 58% (the highest known for any disease), passing it along to your unborn child and even your sexual partners, Denial Be Thy Name. You are correct….it's all about the money……sigh.

  • Katie M says:

    I saw this video today where another of my favourite YouTubers talked about graded exercise and her experiences managing her condition. I thought you might find it interesting https://youtu.be/blfNWd9wTfo

  • Sophie McLaren says:

    I have literally just been told to have CBT for pain! So glad I can tell them where to stick it! I know its not in my head and I know the pain is getting worse!

  • mypupismup says:

    My uncle has CFS and he did a strict elimination diet and figured out that, at least for him, many foods were exacerbating his fatigue including gluten/barley/rye, most potatoes, etc etc etc. It's largely in line with a low FODMAP diet I think. He's still working hard with his doctors to try to figure out the root cause for his CFS, but being on a strict diet has really helped him gain a lot of function back in his life. Just thought I'd share his experience for anyone who hasn't explored dietary routes 🙂

  • Abby Lane says:

    I feel like this is very similar to mental health although it’s more society rather than doctors telling you it’s all in your head.

  • Sophia Likes Red says:

    My mother has a mix of epileptic and udiagnosed seizures. These undiagnosed seizures have confused doctors, so they say they're phsycho-symatic. Which we've proven they're not. Every new doctor who goes into helping her says all sorts of nice things, and then sends us this form. This form's questions do not apply to my mother's condition, they're unanswerable due to the way the seizures work. And they include questions about her mental health, so of course she has to put down the teenage depression… and the doctors go PHSYCHO-SYMATIC!! And we go NO AND HERE'S WHY!! And they tell us they can't help her if she won't cooperate and abondon her case. Ahhh. Life.

  • Phil Murray says:

    This is spot-on, & brilliant – I've shared it on my Facebook & it's getting a VERY favourable response from many CFS/ME sufferers that I know. We all agree about PACE being a cr0ck of…. ****. Thank you so much for making this video, Jessica! 🙂

  • Mary Hines says:

    I can totally relate to hospitals/ medical professionals not believing. I once had a UTI. I went to the doctor and they couldn’t tell and couldn’t give me medicine because I couldn’t stop taking these urinary pain pills because of the PAIN. They gave me an ultrasound which was fine. Well a few days later, I’m in so much pain, I’m writhing in the floor. Childbirth was literally easier. The E.R. nurses (I’m American) said it was IBS, it was gas, I was fine. Again, literally birthing a child was easier. Eventually (several hours) later they did a blood test and much to their surprise, I had 3/4 markers for a severe kidney infection. That nurse sure acted quickly to get me pain meds and antibiotics. My mom and a lady I lived with were both there. Yes. I brought my mom and “aunt” with me to the E.R. so I could get pain meds because I am clearly drug seeking…..

    TL:DR I had a severe kidney infection but the nurse didn’t believe me due to the fact that other people seek drugs.

  • Andy Beaumont says:

    Good video. My wife has severe M.E. so I understand it all. I wondered if it might be worth indicating somewhere how long it took you to make this video? You have taken many clips and strung them together to make a coherent whole. What happened in the gaps? Did you need recovery time between bits of talking? How much did brain fog interfere? It might help the viewer to understand how long it actually takes an M.E. sufferer to string 20 minutes of video together.

  • Sage says:

    I just LOVE your eye makeup in this video! Have you done a tutorial??

  • Cindy Giesbrecht says:

    It really sucks when doctors end up blaiming the patient for things they can't control.
    I have heard that doctors are trained not to believe people when they say they are in pain because of all the addicts. It's very unfortunate for people that actually really need empathy.

  • Grace B says:

    Thank you so much for this, my sister has had ME for 10 ish years and she had to do every treatment under the sun. So many people misunderstand and I'm going to show this video to them!

  • _helloyellow says:

    When my mother was diagnosed, she was just left to it. She was very tired, but struggled to sleep. She ended up wheelchair bound and in chronic pain. She had other illnesses (psychosis and thyrotoxicosis) and it does often seem to end up happening to people with other chronic issues

  • Insufferable Know-It-All says:

    Oh this reminds me so much of my experiences with the mental health system. Im autistic and have PTSD and bipolar disorder (probably, its possible that was all autistic burnout and trauma stuff) but naturally, because i'm a woman, I was diagnosed with pretty much every other disorder before I was with ASD because of medical bias, bad science and sexism. Every woman I have ever met who has made it into a psych ward has at one point been diagnosed (usually incorrectly) with Borderline Personality Disorder. The thing is, doctors treat it very much like they do ME/CFS; Any problem you have is a result of that diagnosis and isnt even actually a problem because its all in your head. Add in a healthy dose of '…and this means youre a bad person and dont deserve help' and thats basically where it has been since BPD was 'discovered'. It was taken off my record when I was finally diagnosed as autistic but everyone who knows it was in my records at one point still treats me like an attention-seeking, lying child because youd better believe theres still heavy stigma within the medical community. It must be so much worse for people who atually have BPD because its not like they can have someone swoop in and free them like I did (though ASD comes with its own issues and I have to constantly prove both that yeah I am disabled and no im not a child now, which is fun).

  • M says:

    I was accused of being anorexic too! Even though it was due to a physical condition…

  • Cora Bailey says:

    I don’t have ME/CFS, (in the process of an EDS diagnosis) but I have this thing where the muscles in my hips tighten up and I’m always told that my hips are tight because I need to excerise more, but that’s not true, my hips are tight because my body is overcompensating for how loose all my joints are. Exercising will just lead to lots more pain…

  • Linda Tannock says:

    Great video!! 👏👏
    I have M.E, fibro, myofacial pain all over my back and etc etc. I'm sure more things will turn up! lol.
    Saw a Neuro for a year, but was told I need a psychiatrist/psychologist on my last visit (i mean seriously?!) Even with a huge list of symptoms and other things. I refuse to see him again. I need someone to fight in my corner, not tell me I need mental help! Well maybe I do, as he was driving me crazy!! 😣😝

  • Lanna's Missing Link says:

    My first ever job was two years ago selling scratch cards on the streets of Dublin to raise money for a supposed M.E. charity. I went into the job half because I was a desperate college student with no real life prior experience, but also because I didn't know what I was doing was wrong. That's not to say I shouldnt take any blame, as there were so many warning signals that the charity was shady or not real. But I feel so bad about doing this and feel like I conned people out of their money and failed to help raise funds and awareness for sick people… Wish there was something I could do to make up for it.

  • Elgne S says:

    as a medical student in the US, im so sorry your experience (and many other people in the comments) with the medical field has in general been shitty… its something that frustrates me as a student (medical education in the US isnt exactly what i'd call effective or efficient) because its such a system-wide issue. theres very little communication between doctors and patients, and between doctors and doctors, so there's just a lot of tunnel-vision going on. (although i guess that's also biology – nothing falls into neat little disease categories, but i guess insurance/ diagnoses/ medication works that way.) doctors are trained to see "horses, not zebras," so when zebras do come along, they're misdiagnosed for a long time before someone finally comes along and listens to you :/ i hope with this new generation of doctors, we can make a change!

  • StopMyFall36 says:

    this might sound weird but when I'm having a "bad brain" day and can't get out of bed I love throwing on your videos and just listening. your voice is very soothing even if my brain doesn't process a lot of it. SO then when I feel better I like to go back and rewatch your videos. I feel like I'm learning so much!

  • Richard Smallfield says:

    One of the PACE authors described the opposition to the study as being conducted by a small, focussed group of sociopathic, borderline psychopathic, young men, who are stopping the voices of the majority of ME/CFS patients being heard. I must say that your disguise is very convincing. I’d never have picked you as being a young man.

  • the hobson says:

    This could be the best vid to show to people to inform on PACE. The relaxed , ironic style makes it easy to watch, yet the seriousness of the subject, well summarised, still comes across. Personally,I got my diagnosis, also in Bristol , only months before these changes. It was then stressed in NHS support that this was a physical , not psychological illness. So grateful I was pretty much left alone, for years and had some warning re adverse effects of Pace before encouraged to take part. I refused, I also know my own body, and thus, these ideas were contrary to common sense! Past GPs, directly or indirectly( found in medical notes) have dismissed ME symptoms, and others- found later to be due to other conditions. Thank You.

  • Madeline Miller says:

    I am currently studying biochemistry (with a focus in medical research) and I had unfortunately heard this story before. We literally looked at this as a classic example of bias in medical research. Those researchers committed the greatest crime in the medical community possible– they intentionally framed their data the have a positive result. Thank you Jessica for bringing this up!! Public awareness/accountability is something the medical community really needs

  • Jennifer Campbell says:

    Omg! I thought I was the only person who needed recovery days while wearing 2 wrist braces….

  • Kenadi Marshall says:

    Doctors….they need to take things more seriously sometimes. I had an issue with menopause that was kind of similar, but I am now having issues with them figuring out why. At first, all doctors I went to refused to check for menopause because of my age and because my mother blew things off in a certain way saying I was stressed with school and other crap (I wasn't. School was my getaway from home, so I loved it). It took me around three years to actually get tested and diagnosed (if I didn't get treatment, I would develop osteoporosis, but I seem to be borderline anyway). However, because of the fact that there is also record of a bad thyroid (autoimmunity. They classified me a someone with Hashimotos, but Western medicine doesn't classify it correctly. It is when your thyroid has completely failed and cannot come back. My thyroid is at a point to where I can work on it. I know how to treat it. Problem with Western diagnosis is that because they aren't taught correctly, the patients end up ACTUALLY having Hashimotos), the doctor pushed the cause of premature ovarian failure on my thyroid disease. Whatever issue caused it also caused a lot of other issues in my body. No Western doctor will listen though because of the thyroid disease.

  • Gigglypeach says:

    I was diagnosed with ME/CFS (and then PoTS) at university in Bath, so quite close to Bristol, and the after effects of the PACE trial really affected my treatment there. Weirdly, not from specialists, but from my many GP's. I was so lucky that my truly awful GP gave up on trying to diagnose me after year and sent me to Bath's specialist adult fatigue unit, even though his exact words were 'they'll send you right back to me, it's so obvious it's all in your head and i'm done with you' (yes doctor of the year right there). The unit immediately diagnosed me with the right things and got me on track with various medicines for the side effects, some CBT for the mental problems and set me up with that lovely colouring chart and really helped me with just pacing out my life, learning my limits. That's all they can do, but I was treated with real care and dignity and was never made to feel like any of it was in my head. I was discharged from their service after a year or so, but I felt confident that I could manage the ME/CFS going forward. Then I went back to my GP for continual treatment and all the problems started again, even though I had an actual diagnosis! Everything was blamed on the ME, even completely unrelated things, but absolutely every single one of them told me to do more exercise and cited the PACE trial as back up. Luckily my fabulous occupational therapist from the unit had told me to steer clear as there was 'something fishy' about it (she was right!) Even now living in a different city, I'm constantly being told that GET is the right thing to do and i'm so fed up. It obviously doesn't work, I have evidence from that one time I did one three minute dance at a barn dance and ended up in bed for two weeks. Pfft. i have actually stopped mentioning my ME/CFS at doctor's appointments now and find that i'm being treated much better. Grrr.
    Apologies for the essay ♥️ (wish I had a nice rug to lie on, I've got ratty carpet and carpet moths) x

  • MelsGunn says:

    Hang on. ME is classified as psychosomatic in England? Holy… that is horrific. That is truly horrific, im so terribly sorry to my fellow spoonies who have to put up with that. Theres so much evidence that its in your body! I'm so sorry you had to go through that, thats… truly horrific

  • Ravenous youth says:

    cfs has been linked to pots. gaining muscle mass in your legs and reducing your resting heart rate significantly helps pots which could in turn help cfs. excersize is not completly stupid as treatment.

  • Tara Weston-Webb says:

    Thank you so much for making this video. The PACE protocols were so problematic for me when I first got sick. Really harmful to constantly be told you just need to try harder, adjust your goals and be dedicated, to get better. Especially when you are all doing all of those things and it isn’t in any way affecting your health because it’s not in your head. Plus you’re getting more and more symptoms because the exercise is causing flares! Yay fun.

  • Felicia Dannemann says:

    Got a narcolepsy diagnosis and during second opinion review, claimed it could Chronic Fatigue but unlikely.

    Didn't understand CFS before, thanks for the video!

  • Jared Phillips says:

    First off. I am so sorry that you have to go through this. Anybody. I'm sorry you have to go through the pain and the people who don't understand. I don't know what that's like. However, I do know that whatever you have to live with, in the end, you are so much stronger for it.

    Second. HOLY COW. I LOVE HER VOICE. CAN YOU READ ME HARRY POTTER OR NARNIA OR THE NEWSPAPER?

  • Savannah Carlon says:

    I have a connective tissue disorder which makes my bones break easily. I went to the ER several years ago and I thought I had torn a muscle or something in my arm, I KNEW it wasn't a bone because I physically couldn't move my arm, it just wouldn't work. But they just assumed I had a fracture that was too slight to show up on x-rays. It took far longer to heal and I didn't get to have PT to help me recover faster. It was so frustrating. The whole "oh you have this so your symptoms must be because of that" is such bullshit.

  • Maiden DE says:

    Fantastic video, especially as I definitely have some CFS issues, & more people need to be informed about the importance of proper study analysis. But I do not agree that most drs these days are trying their hardest to help people, at least in the US. I studied primarily bio & chem as an undergraduate as I wanted to become a psychiatrist & revolutionise the field. This was at Stanford University FTR. Almost all of those pursuing bio degrees wanted to be drs. They were some of the worst people I've ever encountered.

    The majority, IMO, didn't have a true love for science or an interest in helping others; most were severely lacking in social skills, empathy, & compassion – very much NOT people persons. They wanted to be drs bc of their parents, for status, or money – if not multiple of these. Again this is my opinion & obviously there were exceptions. But I became so disillusioned by my fellow bio majors that I switched to chem (much better for me all around), and eventually decided I didn't want to become a dr. I didn't want to be surrounded by those types of people throughout my career. It certainly seems to be much better here in Germany, but even in the early 2000s it was already apparent to me that so many younger drs were these uncaring, unscientific, selfish jerks in the US.

  • S. Messina says:

    Hey this video has no subtitles so it is a bit hard for me to understand what is going on since Im Italian, if you have time or energy, could you try adding captions? Sorry to bother you, I just wanna know what you're saying =^. ^=

  • Eva Rummery says:

    This is so important, but i dont think pacing should be discredited for all people!!I did a pacing style program after being completely bedridden/couldnt move for half a year,and it was the best thing i ever did. HOWEVER- at this point, i had been sick for 3 years, and had been told 100 times by my doctor that i just needed to do more exercise. I did. I got worse- i got told i needed to try harder, i got worse. Until finally i got to the point where myfibromyalgia was so bad i could not move. Trying A pacing program again was the only option, but we tried it differently to how my doctor had always said. We did it so completely slowly, for example, i started by getting lifted out of bed. For a whole month the exercise i did was someone else getting me out if bed. That is all. Then when i could i got out of bed myself, then i walked on my own and made my own food- etc.etc. I now after 2 years I am playing sport,at uni and my fatigue is almost completely gone (my fibro pain has not changed at all and is still terrible.) for this reason i owe pacing my life. But what doctors need to understand is that this success depended so much on my situation! I was young (16) i had no other health issues unlike many other people with cfs, and i had the support system to do the program so slowly. Also, doing ‘pacing’ the way doctors always told me too (‘just go and exercise’) is the reason i had become bedbound in the first place! For pacing to work it needs to start from the VERY bottom and work up so slowly, as slowly as your body needs. And we are never told that, we are just told we are lazy, and to try harder.

  • Horizon Rose C says:

    ❤️❤️❤️ this is so lovely !!! i have cfs & treatment-resistant bipolar, & i’ve been through much of this same experience with regards to ECT (electro-compulsive therapy). brace yourself for a long story, i didn’t mean for this to get this long :p

    i went into ECT because i has been through dozens of medications and years of therapy & meds, & at the time i was in a depressive episode so bad i couldn’t even get out of bed. it was a last-ditch effort; i have a severe electrocution phobia, so it was the last thing i wanted to do. it was literally just my wife & i desperately hoping something would stick.

    i was told a lot of things wrt ECT: it had an “extremely high” success rate, there weren’t any significantly high risks, and my memory would get worse while i was doing ECT, but would all come back within seven months of stopping.

    i actually ended up stopping ECT based on my own decision probably four months-ish later, because i’d done some research of my own and the fine print on all of those claims was extremely frustrating. not only do we have only a handful of studies with regards to the effects of ECT long-term (there are like, incredibly few that follow people more than 6 months after stopping), but the evidence we do have says that at LEAST 50% of people relapse within the first 12 months. the thing is, a 50% success rate IS really good in the psych field !!! but when you hear “a great success rate,” you don’t think 50%.

    another thing i was sort of lied to about ECT is the memory stuff. most technicians will tell you that your memory will come completely/mostly back, but the evidence doesn’t really back that up. in fact, a majority of people who have gone through ECT believe that it has significantly impacted their long-term memory in some way.

    i’m just over a year past the self-appointed end of my ECT, and i can’t remember a lot of really important things in my life; i have really bad retrograde amnesia and medium anterograde amnesia, and my wife has to remind me of a lot of things (both from before the ECT and in our day-to-day life). at the same time, i genuinely think it acted as a placebo effect to kick my brain into high gear & help it work with me. the depression isn’t so bad anymore, and i have a work-from-home job that actually pays the bills.

    but now, i’m really, really big into informed consent, not just for me but for everyone else. i don’t just trust doctors anymore unfortunately, because i know there’s a decent chance that i’m not getting the full story. seeing other disabled people out there doing the gods’ work and just Letting People Know the actual truth about things is so so great for me 🙂

    i know this got all hells of long and @ jessica if you read this i applaud you :p i appreciate everything you do and as a hard of hearing lesbian with cfs, it’s absolutely insane to find someone with any kind of platform who talks about these kinds of things ❤️❤️❤️❤️❤️ keep on keeping on.

  • Netty noodle says:

    Echoing your story. Hugs xx

  • B B says:

    Fantastic video Jessika , love how you put it across and your whole outlook on your past wrongs , i to have been wronged , best of luck to you

  • Luisa H says:

    You look like princess Leia with your crown braid

  • - Charyn - says:

    Thank you so much. I am going into a flare and so reading is quite the strain but listening has been great. I've just been referred to physio for GET. Yay???? lol.

  • Cerys Wakeman says:

    Hi, I relate to this a bit. I have no diagnoses apart from migraines but I have had something wrong for about 2.5 years. It started with a headache that felt like a gunshot and then made me lose vision and black out. I continued to have unbearable pain, occasional vision and memory loss and regular blackouts for 5 months until the doctors hit on a combo that stopped most of the vision loss and blackouts. Then it was migraines which we have mostly managed to stem. What has never changed is the fact I have constant fatigue. Some days I find it hard to stand and others I'm just in a bit of a fog. I sometimes have memory loss and fall off grid. I don't mention it much. I've been to doctors for years and nothing seems to happen. All tests come up inconclusive apart from my heart rhythm being off and having lower than usual blood pressure. But today I'm stuck to my bed again despite having next to no stress in my life, being really happy (until I get bored in bed) and everything. They just assume it's psychosomatic. I don't bother mentioning to people I meet that I sometimes black out, can't stand or struggle to do things like type because I don't have a diagnosis so it's not real. Maybe I am making it up but I'm not sure how. I want to have energy again. I want to be myself. But this is just how it is.

  • brit gordon says:

    It makes me so angry as someone whose school days were spent being fed this and whose opportunities in life have been greatly reduced by the aftermath and yet still it affects my approach to life in managing my illness because it was engrained from such a young age

  • brit gordon says:

    Oh, also, this is a good explanation. I'm basically always too tired to look into these things. I have read one article on it but this is a relatively 'easy' way to take in the information. The amount clearly explained was rewarding for effort put in to listen

  • Anne says:

    This is why medical students nowadays have such a large portion of thei education devoted to learning how to critically read scietific research articles. There are a lot of trials that are sketchy, or at least not as positive as they first seem.

  • Natalie Palmer says:

    Although I don't have ME I do relate to so much of what you have said about doctors, treatment and the DWP. I have fibromyalgia, Lupus, IBS, an enlarged heart and spinal injuries. Everything I ever suffer from is automatically put down to fibromyalgia so because doctors don't know what it is or how to cure it they seem very reluctant to help manage symptoms or waste their time on you. Despite each of my illnesses being diagnosed by an NHS doctor or consultant last year I had a totally unsympathetic and rude locum female GP tell me in the presence of a witness that nothing was wrong with me and all I needed to do was exercise and get out more! She also put down on my records that I have no trouble walking when I need a stick and had to have my carer with me. I have had problems with my legs from birth as I was born with defects.

  • lucymarie100 says:

    This is not the video I though it was going to be about at first glance, I thought it was all about being arrested and Police and Criminal Evidence (also known as PACE). I learned something new. I am now also irked.

  • Vega says:

    I just wanna say that your videos help me so much with accepting my limitations and forgiving myself when I can't do things. Thank you for that 💜

  • Jessica Richmond says:

    "It's just in your head" should be banned from all medical practice.

  • Sylv Aine says:

    Oh this is infuriating.

  • Amanda Duncan says:

    You truly make me feel less alone. I feel like you so understand multiple illnesses/ diseases. I lost so many friends and family because they can't handle the " Me" Now…. I feel alone and misunderstood.

  • Alice in Wonderland says:

    A bit of a sideways step, but I've also experienced the misdiagnosis thing based on how things appear to doctors :/. As a kid I was apparently diagnosed with asthma, but then subsequent doctors, denying me access to my records, claimed that because I was a young/eventually teenage girl, not particularly sporty and had chubby cheeks/was a little chub, I was clearly just unfit and needed more exercise. Obviously asthma affecting my lung capacity and exercise being a trigger, that didn't exactly work… until fifteen years later, when a doctor finally believed me, tested me for asthma, and got me on the right medication. (I'm literally on steroids every day. I can't believe I didn't know what it was like to breathe for nineteen years of my life.) Can doctors please try and counter their unconscious bias from appearances/other diagnoses? Please? Maybe?

  • Cassyzp says:

    I live in Brazil. I don’t know about how the PACE came and affected doctors here but it is exactly what they tell you. One nice doctor even told me I should come back only after I lost some weight and exercised. I just had told him to help me find a physical thing that wouldn’t harm me even more. I wish doctors could remember that hey, we’re human.

  • LivingLifeWithLisa says:

    I had the same problem I was told my TIA’s were all in my head and dismissed. They were so much in my head, I now have Early Onset Dementia!

  • Кат Жак says:

    I agree that any doctors (and people in general) tend to say "WELL IT'S ALL IN YOUR HEAD ANYWAY", and I know that can be tough. But if pain or paralysis is psychosomatic, that does not mean it's not real. Some people do suffer from psychosomatic conditions, and their problems are real. They are not 'doing it to themselves' and their problems are just as valid. I kind of feel like videos like this tend to dismiss their suffering? And I know you don't mean it that way and I really love you and Claudia and your videos! But I just wanted to say that.

  • Isabella Durante says:

    This video inspired me to write a paper on chronic fatigue syndrome for one of my classes (we got to choose the topic) Thanks so much for the information. ( the lancet still hasnt retracted the paper- its ridiculous)😡

  • D Caius says:

    Thank you so much for this video. Many things you've said hit close to home. I've heard a LOT of testimonies from chronically ill people being told to exercise as if it would solve all their issues. And the medical neglect that face people labeled "crazy" is an outrage – – once you get that label, nothing you say about chronic pain is ever taken seriously, as if people struggling with mental health couldn't also have a physical illness. It's truly abysmal how many patients are routinely gaslighted.
    Anyway – – thank you for making this very informative video. I feel better equipped to discuss this topic in the future. It might not be your most joyful video but I thought it was very empowering to me nonetheless.

  • Emily Nutt says:

    I relate to doctors saying it’s all in my head, it made me so mad. I was ill for three months!

  • justabitofamug says:

    Nice rug

  • Kristina Knapp says:

    I no longer go to hospitals because of how they treat me. I don't have cfs, but a doctor here and there have written down in my files without ever mentioning it to me. But I'm treated so badly at hospirals/emergency rooms because I take pain medications even though its managed by a pain management doctor. They treat me like an addict even if I haven't mentioned anything about pain. In September of 2017 I fell off of a rollercoaster at an amusement park and when I returned home my legs were so swollen and they hurt and because I have a history of heart issues including a whole in my heart I was concerned about blood clots because they can happen after a fall and when traveling which I had just done. They refused to do any tests because the doctor thought I was there looking for drugs. Even though i hadn't mentioned anything about wanting something for pain. Most doctors don't know what my main condition even is, which is Ehlers Danlos Syndrome, that they pretty much think its made up or that I'm simply faking it.

  • Bert Visscher says:

    This may not be the most cheery video, but it's informative.

  • f says:

    As a Psychology student, CBT or other similar therapy should be used for Chronic Fatigue patients to help accept their condition and help how to move on with their lives. Chronic Fatigue isn't just a condition that will be cured after a few weeks. Any lab studies aren't naturalistic and how studies are actually measured is so important. Overall studies should be used in caution when applied in the NHS unless they've been replicated a ridiculous amount of times, in different settings etc.

  • Hanna Moore says:

    “Or it could be your thing too…” story of my medical life

  • In Alaska says:

    I am so sorry for your Drs confusion. I had a baby last year and for the last year had Dr blame my symptoms on having a baby. Turned out I have pretty much no thyroid function and all of my hormones levels were just gone. I finally switched Drs after a long standing infection that tried to ruin my vision. New Dr finally referrd me to an endocrinologist, I got started on medication and I finally started to get my symptoms under control.

  • WhichDoctor1 says:

    I’ve had quite bad m.e. for 20+ years and pretty much gave up on seeing a doctor for anything for a long time. Any problem I went with they would be like, “probably something to do with your m.e. so it’ll might get better by itself. Or won’t. Either way just go away”. That was until I heard about a consultant giving m.e. Patients antiviral drugs. Managed to get a referral to him. He did a test that proved I had a chronic viral infection, put me on a old cheap antiviral drug and a couple of years later I’m living on my own, working two days a week and hopefully still improving! The drug, and test have been around since the 80s.

  • Kristina Erhardsson says:

    Thank you so much for this video. I am looking at doing an inquiry/poll study and it helped me remember the basics – don't move the goalposts, and make sure to explain in the questionnaire that it is important that people answer honestly so that real help can be based off the results. Nothing is worse in these instances than bad data.

  • Harleqwn Powell Rimmer says:

    I laughed when you mentioned kidney stones, as when I was heavily pregnant and peeing blood for WEEKS and in crazy amounts of pain, because I'm diagnosed with MH issues, they ignores me and my concerns entirely and offered basically no help!

  • Icia Jay says:

    I just found your video. I have fibro and complex ptsd. My Dr for years knew about my PTSD and tried to tell me I was a hypochondriac. He was proven wrong after 15 years of otger Drs chiming in. I basicly had to diagnose myself for both until other Dr's did.

  • Ashley Incognito says:

    I'm glad to finally hear about this! I didn't know much about CFS before your videos, but I remember reading this article awhile back and being like… hmmm…. i dont know much about CFS but this sounds wrong, and it sounds like the scientists are whining for being called out by their patients. I'm glad to know I was right! https://www.reuters.com/investigates/special-report/science-socialmedia/

  • Sophie Nicol says:

    😆 I love your facial expressions when you’re being sarcastic, you can really feel it! “It’s fiiiiiiiine…”

  • Fran Horne says:

    wow that's familiar. I don't have CFS I have dear friends who do but my experience mirrors this very closely with my own health, disability and weird conditions 😉

  • P VDM says:

    I have CFS and did increasing exercise and felt bad. Even sick. I am now on the waiting list for a psychologist, because it is “all in my head”.
    I got sick when I migrated, but because I didn’t have a number from my insurance, I didn’t get the help I needed. From that time off I have this. I need to learn to deal with it, but I get forced to do stuff that make me sick

  • Cameron Cassettari says:

    I'm in a weird spot disability wise as I've got CFS and CPTSD which includes this fun thing called somatisation. Which is essentially psychosomatic symptoms as a result of trauma. The CPTSD actually crosses over with so many other things that its hard for me to get a straight diagnosis from medical professionals.
    But because of these two conditions the many times I've been to the hospital I've been either dismissed or talked over.
    My most recent experience I had the doctor offer to send me "someone to talk to" and also letting me know it could be hours before I could talk to someone.
    Suffice to say I just went straight home and the spoke to my regular GP about the incident instead.

  • Natasha says:

    I also hate how "it's all in your head" is used as a way to minimise a disability, too. My depression and anxiety is "all in my head" but that doesn't make it any less crushing to deal with. If someone's disability is mental it doesn't mean it's any less deserving of respect and understanding.

  • Lauren Dorrill says:

    I wrote a paper on this exact thing! I was diagnosed with M.E., but now my doctors are rethinking my diagnoses. I recently was diagnosed with POTS, and my doctors are looking into other diagnoses as well, bc all my symptoms are not explained by POTS.

  • Samantha Kerger says:

    I love this whole video and I’m so glad you made it because now I have a much more pleasant way of redirecting the, “HaVe YoU tRiEd YoGa?!?” conversation instead of just like. Getting so mad my vision blurs.

  • Adèle Dunant says:

    After seeing your video about "disabled in school", I noticed at 10:00 that you say yourself "the day after Im gonna be incredubly useless". This word still bumps in your head.

  • Katy Plays Sims says:

    I'm honestly wondering how to tell if you have ME/CFS… I'm starting to think I may have it because I'm 23 and am so much more tired and, well, fatigued, than most people my age, and even my 60 year old mother. As well as other symptoms like difficulty getting to sleep and not feeling rested even after a lot of sleep. I honestly have been assuming it's to do with my anxiety and depression (which it could be) but could it possibly be ME/CFS too?

  • Door Mayhew says:

    These videos that you have made about M.E. mean so much to me. It can be so difficult to try to explain to friends and family why I can’t just build up stamina over time, and why I can’t just “push through the pain“. You cannot push through pain when you are completely exhausted, and you cannot push through exhaustion at all.

  • KayBeeWolf says:

    Exercise kills generally healthy ppl who havent done it in a while. How could they think it would help someone who is sick

  • #Actually Autistic Katrine Basso says:

    I have got fibromyalgia and have had a similar approach of exercises and I was suggest to go for cognitive behaviour therapy which did not help me and the exercises made my fibromyalgia worse. I am an autistic adult and the cognitive behaviour therapist did not know how to alter the therapy to take in consideration of my autism as I had to do a lot of visualisation exercises which I could not do.

  • Robin says:

    i knew the pace idea wasnt really accurate at all just from my own experiences with undiagnosed chronic fatigue and trying to push through my fatigue until i felt so sick it was as though i had the flu. i hadnt heard all this stuff about how they manipulated the results, werent able to replicate them, and that there were conflicts of interest. i really wish this wasnt treated as true since its frustrating to tell people about fatigue and their response to be "just exercise more!" trust me, i have tried it.

  • Dancho Danchov says:

    Your videos are multi benefit for me!
    First, they're educational and I learn a lot from them, second, I'm an English learner and your British accent is amazing to listen to, and third, they're inspirational and it always proves my point that people with disabilities are the strongest (if that made any sense).
    Stay happy, best regards!

  • mari_who_ana says:

    Not ME.. but when i snapped a ligament of my knee and my kneecap kept popping out of its place and i went to all the doctors in my hometown and they didnt see anything wrong bc it was in its normal place when they examined me and my dad was in their side so that made it clear that i was the crazy one. Almost 5 years after that, having gone out of school and into uni, different place.. walking to class and back every day, my knee popping out of place every few blocks and me having to sit in the floor and hit it back in lol fun times.. one time it didnt went in and i had to go to the doctor and bc i was in a different place and not with a toxic parent i was able to get help from an expert and he saw within the first 10 seconds of the exam that my ligament was completely broken and he opperated on me two weeks after that. Here i am almost 9 years after that, recently being able to run normally but with a whole lot of other problems in my neck and showlders that are aparently in my head but i know they are not and its so frustrating to have this happen twice i cant imagine what your life is like i feel for you i wish there was something to do with this damn doctors.

  • Mikaela says:

    I’m 21 and my score was 11.7% 😱 gosh darn that endometriosis!

  • Hunter M says:

    Dude psychiatric units suuuuuuuuuuck I only had to spend a week in one but I was like 13 and it was really just Horrible

  • nimrodgrrrl says:

    I’ve got fibro with severe fatigue and everything in this I relate to. Uhh just because back pain and bulging discs are common doesn’t mean it’s normal or okay in any way that I am losing my bladder, losing feeling during intercourse, and experiencing frequent numbness in my legs 😩. Been told in the same clinic to exercise more and to exercise less. I’ve been in therapy for 6 years, it ain’t my brain y’all 😬. Thanks for this video and all you do 💖

  • Katie Kichula says:

    Here a year after you posted this just to share that I am an immunologist and we are currently looking at the immunogenetics of CFS/ME, hoping we can find more info!

  • Briar Ly says:

    I went to a therapist partially because I thought I might be bipolar. After confirming I was who I am and telling him this, he told me "You're not bipolar". Well, he should get his brain scanning super power checked, because the next time I went to a therapist, years later, I was diagnosed bipolar 2 with mixed episodes, which has caused tons of problems for myself in the years that have passed, including dropping out of college after a major depressive breakdown.

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