SPEAKER_00: there can be such a crazy mix of symptoms coming at you when you have chronic fatigue syndrome or mecfs things such as problems with memory or concentration sore throat headaches enlarged lymph nodes muscle pain joint pain unrefreshing sleep debilitating fatigue nausea food intolerances post exertional malaise dizziness digestive issues allergies sensitivities to light sound smells and chemicals irregular heartbeat shortness of breath just to name a few and with mecfs whether these symptoms come on suddenly or slowly creep up over time this onslaught of new symptoms can be overwhelming and confusing and scary and we live in a world that has pretty much taught us to treat our unwell body like a broken down car so your car is not running like it should you might need a new battery or alternator or a new fan or belt of some sort we're told that our body like our car has a bunch of separate parts and when we are unwell we are to focus on each part in our body separately and fix each part individually so when we find ourselves facing this nightmarish illness known as mecfs we naturally might set off and try and tackle these symptoms that we are seeing in our bodies and fix them each one by one so of course we're overwhelmed and confused where does one even start so in an attempt to tackle this topic i've invited my good friends liz carlson and pamela rose who like me have lived with and fully recovered from chronic fatigue syndrome or mecfs to join me in a conversation about the potential role and value of focus on symptoms and comparing our symptoms with others i think most of us during our lives are brought up and conditioned and taught to focus on symptoms probably one because we don't have that many because we're generally healthy hopefully and two just because this is kind of how society seems to be wired so you have a symptom you focus on it you google the heck out of it you get yourself all worried about it you talk to other people you see if anyone else is facing something similar you go to the doctor you see how to fix that symptom and what you need to do to treat it in my experience with mecfs this never really got me anywhere because this illness can express itself in so many different ways and for me recovery ended up being not about focusing on symptoms and treating specific symptoms but on supporting my body as a whole i definitely did do some symptom management along the way and it was more of a means to an end or a way to keep myself comfortable during the process of recovery but targeting the specific symptoms was never healing them in my experience so if i had pain i might take painkillers or if i was having really bad problems with sleeping and i was trying everything under the sun and nothing would work i might go see my doctor and get some prescription sedatives so the symptom management that i did was more palliative and not so much about recovery now i'm certainly not advocating that symptoms in our bodies should be ignored i think we do need to pay attention to them of course go to our doctors get the tests done necessary to see what's going on if it's anything that we should be concerned about or if this is just part of our lovely mecfs package but i've definitely found that once we have assessed that these symptoms aren't a sign of something else that it's just part of mecfs that putting too much concentration on them isn't really helpful

SPEAKER_01: honest moment so after sharing my full recovery story from mecfs i get a lot of great supportive messages but i also get asked to compare my own symptoms triggers and challenges with others sometimes the exact levels and if i have fixes right now

SPEAKER_01: i'm here to tell you why symptom comparison and stop the symptom thinking isn't actually helpful to healing and i totally understand i was once in your shoes so i think i can bring an interesting perspective to this because i help people manage conditions like mecfs every day and yes something that people are always keen to talk about is my story when they hear that i've been there and i fully recovered from me cfs they really want to know what helped me and of course they do and i remember what it's like i remember how desperate i was to find the thing that was going to fix me i spent thousands of hours googling my symptoms to find other people with those symptoms and what pathogens they could be or what organ can be affected so i can then take herbs or find supplements to fix those symptoms

SPEAKER_01: this led me to spend thousands of dollars this led me to buy tree bark shipped directly from africa this led me to almost poisoning myself by buying organic elderberries from oregon and eating them not realizing you're supposed to sip them in a tea this led me to many doctor's appointments trying to figure out what was broken with me it led me to many forms trying to compare my viral levels with other people's viral levels and then seeing what prescription antivirals they took and if they said i took them but they didn't really help me much i'd be like well they helped you some i need to get those but you know what i crash anyway well the supplements did help me get by paralegal enough to walk two blocks to my grocery store and back i needed a more comprehensive strategy to actually heal that didn't involve just trying to stop all my symptoms one by one

SPEAKER_00: now that i've recovered and i'm sharing my story i get quite a few people reaching out to me and telling me a bit of their stories and about what their experience has been which is really incredible i love connecting with so many people in this way i think it's a really amazing thing one common theme that i see is that quite a few people want to compare their symptoms against mine they want to see i have this did you have this happening or i have that or can you tell me what symptoms you had for this and i think this happens for a couple of very understandable reasons i think the first reason that this is happening that i suspect is that people want to see if we're the same if my symptoms match your symptoms and i recovered then that means that there's good hope that you can recover but if my symptoms are different you might assess that that means oh that that means that you can't recover

SPEAKER_01: and i just was seeking reassurance you know my symptoms worse than other people's are they bad good what helped one person is that going to help me and what i absolutely know now from helping schools of people is that what can be hugely helpful for one person can make lots of just a difference for somebody else unfortunately

SPEAKER_00: and the second reason i suspect this is happening is because people want to treat their specific symptoms so if i had a specific symptom that they had they want to know what i did to get rid of it

SPEAKER_01: another reason people reach out to people who've recovered trying to compare symptoms is because they want them to tell them what to do and that's not honestly how i healed i had to look in the mirror and say liz i'm going to save you and you know i did have coaches who are so helpful to me at the end of the day i had to call the shots and trust my own intuition

SPEAKER_00: so both of these things are very understandable but i think both of them can also be problematic and i think this can be problematic because this illness can express itself in so many different ways if someone is sizing up their illness against my illness and it doesn't match exactly and then from that what they take away is that they do not have a chance of recovering obviously that's a really dangerous mindset to get into many different illnesses can express themselves in many different ways and it does not mean that it's not the same thing and the second way that it's if not problematic just not helpful is because if people want to know about my specific symptoms and how i treated them i didn't actually treat them specifically so i just really have nothing to offer people who want to know how i handle different symptoms and i suspect that the response that i give them is not very satisfying usually along the lines of yeah i generally pulled myself out of this illness by treating my body in a holistic manner and as i slowly improved overall my symptoms slowly decreased until they were eventually gone which in the moment if you've got one really annoying or frustrating or difficult symptom that you're trying to get rid of is probably frustrating to hear

SPEAKER_01: another reason you might want to compare your symptoms with someone else who is healed is because you're worried that your symptoms are so numerous so scary so crazy and you want reassurance that it's still possible for you too to heal and i just want to say yes it is possible for you to heal no matter how random crazy or numerous your symptoms no matter the levels and while i list many symptoms on my website and in my interview with raylan i shared some as well there's tons of i don't mention but it's because listing every single symptom isn't going to help you get out at the end of the day the symptoms aren't the issue the symptoms are just your body's manifestation of disease i would encourage people to yes do some reading online maybe research some things purely from a point of view of it being reassuring and inspiring but don't get too caught up on comparing symptoms scanning information for what were their test results what were the particular blood levels they had for certain things what really helped them it probably won't help you personally just use that to inspire you to perhaps give you some ideas but don't get too carried away don't compare

SPEAKER_01: your symptoms with somebody else's your test results with somebody else's test results stay true to what's going to work for you certainly when it comes to test results knowing what somebody's blood reports were doesn't really impact or have any correlation to what yours were because it depends what your starting point was what's normal for you you know i promised that if i ever got out of the health hole that is mecfs i would share my story to help inspire others but what i didn't sign up for was to troubleshoot people's symptoms one on one

SPEAKER_01: i actually know quite a few people who recovered who share their story and then got overwhelmed by all the messages and then they left social media because it was just too much and i myself am an empathetic person but i'm also a person who now has boundaries and one of my boundaries is not talking about my old symptoms with other people and also not talking about their symptoms with them either

SPEAKER_01: but i love hearing positive messages and getting feedback of what people might want to hear but i choose not to talk about symptoms one on one even writing my own story on my blog honestly took me forever because it's pretty traumatizing going back there i mean i look at it now and just words on a page but

SPEAKER_01: this was the worst thing that ever happened to me and

SPEAKER_01: if you're there you know that so consider that the people who share their stories are still human and it might still be fresh their challenges on their journey another thing i just want to touch on is the fact that i'm really not a fan of labels i get people coming to me especially at the moment with people who have got long covid as we call it in the uk post covid fatigue and they want to know have i still got post viral fatigue or is this mecfs you know i'm not a huge fan of labels because to be honest it doesn't change doesn't change anything what it's called doesn't suddenly change how you're feeling or how long you've had it or how long it's going to take you to recover the important thing is you are doing something about it so although there are a couple of instances where perhaps it's useful to have a label like if you really are in the deep sort of chronic end of the extreme fatigue scale and you need to get signed off work and those sorts of things from a practicality point of view can be useful but on the whole labels don't make a difference and comparing your symptoms to somebody else's and are yours worse or better than theirs again that's something that i really encourage people not to get too caught up in i'm a big believer that if the severity of the symptoms that you are experiencing is enough to change your life to a certain extent then that's severe for you it doesn't matter how it compares to somebody else's life it's all about your journey through and i guess that's the point i keep coming back to today is make this personal to you build your recovery plan for you and i hope that this has been helpful i want you to look at your own life like a scientist without freaking out about everything yeah i hope that made sense to you and sending you my support along your healing journey you've got this so my key message to everybody watching this is look at your own personal journey through this don't compare your results to somebody else's because your starting points would be different your whole makeup will be different there are so many different factors that can

SPEAKER_01: play a part in that and the one thing that i think all three of us absolutely agree on is that everybody's experience of living with mecfs is different not only because how long you've been on that journey might differ the severity of your symptoms what your symptoms are indeed but because of our individual lifestyles so just like pacing has to be tailored individually for a particular person because their life is so different i truly believe somebody's recovery plan and them selecting the things they want to try

SPEAKER_01: needs to be tailored as well

SPEAKER_00: so what do you guys think do you find it helpful to pay a lot of attention to your specific symptoms or are you also having the experience of recovery being a more holistic process are there times when you find it helpful to compare with other people you've heard our thoughts it's just three of us we'd love to hear yours as always this is how we learn this is how we grow this is how we get past this so let's keep the conversation going in the comments because we'd love to hear your feedback and your experience with all of this and a huge thank you to liz and pamela for taking part in this i very much appreciate having your contributions to this and i'm sure everyone else does as well and if you enjoyed this video you might like this video right here on the screen where i review some of the latest research coming out of harvard that helps us better understand mecfs so take care everyone sending love to you all i hope you're doing well thank you for watching and i'll see you again soon
