Sophie Cooklyn

Severe to very severe M.E. is NOT ‘just’ M.E. and it

MUST be treated differently!

I have very severe M.E. Which is a whole new level of suffering than those with mild and moderate! I believe that there are stages to this disease just like that of cancer! I have  had each degree of severity and know it is much worse in comparison!

Mild is worse than not having it!

Moderate is worse than Mild!

Severe is worse than Moderate!

Very Severe is worse than Severe!

Each severity is worse than the last!

More complications and problems arise the worse you will become and that should be known far and wide by EVERYONE that M.E. is not just a petty disease! But one that should be taken very seriously! This post is aimed for awareness and is aimed to help people understand what we live with day in day out! If you have some time out of your day, please read my write up! This will help you understand what me, Philip & Lucas have to ‘live’ with on a daily basis! What millions of us have to ‘live’ with and ‘fight’ every single minute that passes us by! It is very hard to say we are ‘living’ with this disease... for me.. it feels like nothing but death! That’s why I like to prefer to say we are ‘fighting’! My entire body feels toxic! Poisoned! And so very sick! I wake each day worse than the last! Wake each week with more complex symptoms! Symptoms that are too many and too extreme to describe! I think there are almost 70 symptoms recorded for a severe M.E. patient! I think I have at least 40 of those! (I didn’t count but knew I had over half on that list!)

Here is a list below of the MANY complications and illnesses / issues that

arise with M.E:

Post-Exertional Neuroimmune Exhaustion (PENE) Cognitive Dysfunction, Muscle Fatigue, Muscle Pain, Numbness, Intolerances, Pain - Chronic (widespread / Anywhere / Everywhere), Sleep Disturbance, Ongoing’ Flu-Like Sickness / symptoms, Seizures, Involuntary Spasms, Disequilibrium, Vertigo, Deficiencies, Arthralgia, Shakiness, Tremors, Alcohol, Drug / Chemical Intolerances, Tender Cervical / Lymph Nodes, Susceptibility To Infections / Virus’s / Flu / Sicknesses, Eye Troubles, Sore Throats, Orthostatic Intolerance, Bladder Dysfunction, POTS, Osteoporosis, Osteoarthritis, Costochondritis, Multiple Chemical Sensitivities, Light / Sound / Touch / Smell / Motion / Vibration Sensitivities, Allergies, Insomnia, Irritable Bowel Syndrome, Fibromyalgia, Severe Nausea, Restless Leg Syndrome, Hypersensitivities, Organ Failure, Muscle Wastage, Severe Itchiness, Migraines, Lactic Acid build-up, Neurological Issues, Double Vision, Swallowing Difficulties, Paralysis, Extreme Fatigue / Exhaustion, Inability To Walk / Eat / Sleep Or Wake / Wash / Lift Limbs, Pins And Needles, Painful Cramps, Blackouts, Numbness, Sweating, Inability To Moderate Temperature, Heart Failure / Attacks, Chemical imbalance, Endometriosis, ..... etc etc etc......!!! I don’t have all of these issues named, but I do have 'most' issues listed here! This list is practically ENDLESS!!! These are issues that I can only think of from the top of my head and there’s SO much more than this that can, will and are arising! Most of them happen with severe to very severe ME only, but even mild to moderate sufferers are known to be suffering so much more, as if they are dying with AIDS / HIV, Cancer etc. Those disease can kill too... but people who have had both cancer and M.E. have said them- selves that M.E. is much worse for them to have! The reason being: you either die, or you take treatment that you get better with! With M.E. you are dying for decades! Specialists and scientists have said the same when witnessing dying patients without M.E. to those with it or both /multiple diseases... the lack of quality of life... well... it is next to nothing!!!                 Here are resources below to back up my statements: http://journals.plos.org/plosone/article/file… https://livingwithchronicfatiguesyndrome.wordpress.com/…/h…/ https://www.healthrising.org/…/chronic-fatigue-syndrome-wo…/ http://www.netdoctor.co.uk/…/is-me-really-worse-than-cancer/ This disease has the poorest quality of life out of any disease or illness out there! So you can imagine the suffering of that alone! (Not that anyone would want to imagine or suffer any of it, but this awareness has to be made!) For myself... it is not getting any better.. so far... it’s only get- ting worse each day that ‘passes’!! It’s disheartening.. it truly is! But I’m strong willed! I will learn and teach. I will be my own advocate and keep fighting. I will keep speaking out! Awareness goes an extremely long way with this disease and it’s the best thing we can all do until we find the CURE millions of us deserve!! We need more medical professionals to do the ‘correct’ research, studies and practical work for patients! We need more people to help fight for us! Especially anyone without this disease! We need better care! Doctors / GP’s must give home visits to the severely affected! We need so much more funding! We need to STOP neglect and isolation! We need to be believed and understood! It is a living death! Too much suffering, torture, torment, neglect, isolation and lack of understanding! Anyone of any age / race / gender / history etc. can become sick with M.E. This disease does NOT discriminate! What is worse is finding out there is little to no help when fighting it! We are trapped in our bodies and watching the world around us go on without us! We are neglected and isolated by everyone around us including medical professionals, scientists, friends, family etc. We are disbelieved by many but thankful for by those who chose to stay and also those who are making a difference in every single way no matter how small... it is appreciated so so much! We need more knowledge! Here is another brilliant resource on the fight we have to endure regarding CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) ((The Significance to ME/CFS of the Landmark Change to the UK Law on Consent)) http://forums.phoenixrising.me/index.php… Just sharing this post will do wonders alone, watching films on M.E. listed below, and reading the books I’ve also listed at the very bottom of this post This will also be very much appreciated! Our family and friends who care for us live in isolation and suffering too and they have to keep us alive! This post isn’t in any way aimed to be a negative one but this disease has very little positivity surrounding it. These are facts that need to be known by every M.E. sufferer, every single disabled person and carer, friends / family, the wider public, government, scientists, professionals of every single area and... YOU!!! No disease / illness / disability etc is nice to live with but I cannot emphasise how much stigma surrounds this particular one! I didn’t ever once think before I did my research, that there was such neglect in this world surrounding illness. I didn’t ever believe so many people were being failed / abused / neglected and mistreated just for being ‘SICK’! Every single major disease out there has funding / treatment / Biomarkers / cures... this one has been neglected and patients have been abused and mistreated so badly by the healthcare system! It is disgusting that this has happened and is still happening! Medicine is failing us! Too many sufferers have been removed from their homes and treated as ‘psychiatric patients’ Too many have died from M.E. itself and too many have taken their own life! Too many are left untreated and undiagnosed! Too many diagnosed way too late, unable to recover and only gotten worse! (Myself) Too many have been told to exercise, been forced to do Graded Exercise Therapy and Cognitive Behavioural Therapy! (These have done more harm than good!) There have been too many cover ups and the NICE guidelines in the U.K. are still in review which need to be changed very quickly before more damage is done! Don’t let the politics scare you! It is extremely important to learn what is happening. It is like the AIDS epidemic all over again! This disease is worse than any out there and there is little, lack of and no funding all around the world! Millions are suffering and left to die! There are over 250,000 people in the U.K. ALONE diagnosed with M.E.!!! There are thousands / millions still left undiagnosed!! It occurs in outbreaks, clusters and individual cases! M.E. can be fatal! it is not a disease that should be taken lightly! it is a KILLER!!! There has been evidence found during autopsies to ‘prove’ that M.E. does in fact have a physiological/ biological cause. Extremely sick, very severely affected U.K. woman ‘Sophia Mirza was taken from her home and placed in a mental institution! She was institutionalised for 13 days! When she arrived back home after her mother fought for her to be back, she was much much worse!! Two years after taken from her home, her health had deteriorated so terribly that she developed intolerances to all food she ate, ear infections and severe pain! She was only able to consume small amounts of water but eventually, when she couldn’t fight any longer, Sophia had passed away at age 32 on 25th November 2005! Her initial autopsy was inconclusive for her cause of death but the results of an inquest released on 13th June 2006 determined her cause of death to be acute renal failure and dehydration! During the inquest It was found during her autopsy that 4 out of 5 of her dorsal root ganglia showed abnormalities and inflammation and they had found changes in her spinal cord too! This was enough to prove that M.E. is in fact ‘Neurological!’ She was the very first woman in the World to have had her cause of death being the result of M.E.! CFS (Chronic Fatigue Syndrome) they instead decided to name her cause of death, because of the lack of muscle inflammation in her body! But she did infact have ‘M.E.’!!!

ACRONYMS!!!!!

M.E. Vs CFS!!!!! CFS (Chronic fatigue syndrome) is ‘NOT’ M.E.!!! It makes me and many others question if CFS is a completely different thing! Eg. Deficiencies, low immunity, allergies, intake of aspartame, intolerances, sensitivities etc. These issues can all give symptoms related to... M.E. Fibromyalgia, Lupus, Lyme Disease, Chronic Fatigue (chronic fatigue is a symptom in itself!) and many other illness / diseases / dysfunctions! M.E. ... Myalgic Encephalomyelitis = My - Muscle Algic - Pain Encephalo - Brain Myel - Spinal Cord Itis - Inflammation Muscle pain and inflammation of the brain and spinal cord! If you have pain as a large feature, along with the tortur- ous exhaustion, PENE, Cognitive issues as well as the many other main features that are required for diagnosis then you have M.E.. If you 'DO NOT' have inflammation of the brain and spinal cord, muscle pain, PENE, cognitive dysfunction, unrefreshed sleep, ongoing flu-like malaise etc etc etc... you do NOT have M.E.!! Stop calling it CFS! It leads to so much misunderstanding / controversy for all of us who are terribly sick with M.E.! Get the correct diagnosis! Call it M.E.!!! Resource to back up: http://www.hfme.org/comparisonchart.htm This is something that is starting to come into light a lot recently and I think CFS is a lazy acronym and causes a major misunderstanding for people who have M.E. The first outbreak of M.E. happened in 1934! It first appeared in medical literature in 1956! After so much controversy... M.E. was given a new name! ‘Chronic fatigue syndrome’ (CFS) Which appeared in medical literature, in the late 1980’s! It was made up by the Americans to fob people off and make their illness seem less debilitating for insurance and political purposes! It has had many ‘disturbing’ names! -Poliomyelitis -Royal Free Disease -Raggedy Anne Syndrome -Yuppie Flu -Atypical-Polio -Post Viral Fatigue Syndrome (PVFS) Still Used! -Chronic Fatigue Immune Deficiency (CFIDS) Still used! And many MANY more!!! I have a book which has over 90 names that were used! Many of which are still to this day being used... all around the world!! instead of M.E.!!! Many patients were diagnosed with ‘Hysteria’ which is now named ‘Conversion Disorder!’ This name implies the M.E. patient suffers from psychiatric/ psychologi- cal illness! Implying that everything they feel.. is all in their head! Many (too many!) were sectioned! Put in psychiatric units, unable to see their loved ones! Too many have died as a result!! Want to know a disturbing fact? THIS IS STILL HAPPENING TO THIS VERY DAY!!! We need to correct the system! We need to call it what it really is and that is M.E. ALONE!!!! People need to stop using that term and start sticking with M.E and get diagnosed as M.E. You MUST get your doctor to change the term and STOP using CFS! (Or any of the other names that are being used instead of M.E.!) I absolutely hate that acronym!! CFS implies that we are just ‘tired’! We are FAR from that!! My doctor said CFS ‘before’ I was diagnosed! I corrected him to say M.E. and he doesn’t use CFS anymore! We need to change the stigma surrounding it but first we need to stop that acronym itself! M.E. AND CFS.... THEY ARE NOT THE SAME!!! THEY ARE TWO DIFFERENT DISEASES!!! We cannot give up now! We must not ever give up hope! There has been improvement in many ways and I do hope they find a cure real soon before it is too late! I don’t know if there will be one in my lifetime but the research and clinical studies now have proven that progress is happening real fast! As spoken in this video.. in one year alone there has been outstanding progress and hope! NEVER GIVE UP HOPE!!! Medicine should never fail a patient! Medicine should be there to save its patient! It should be there to help many lives that need saving but we need funding and we need knowledge! We need it very fast!! We are the #MillionsMissing!!! Please read and share widely! There are much more videos and films out there as well as books and resources! I have listed a few extremely good ones below:

FILMS

Voices from the shadows (free to watch - long version can be watched by following easy-to-follow instructions! Short version can be watched for free anytime) http://voicesfromtheshadowsfilm.co.uk/ What About ME? (Free to watch on Amazon Prime) https://www.amazon.com/What-About-ME-Susan-Douglas/dp/B072L2MCX5 Forgotten Plague (Can be bought on DVD / ITunes / Google Play) http://www.forgottenplague.com/ Unrest (free to watch on Netflix but can be bought on DVD / ITunes / Google play) https://www.unrest.film/

Books

Jodi Bassett - HFME Caring for the M.E. patient: https://www.amazon.co.uk/dp/144529639X/ Dr Sarah Myhill - It’s mitochondria, not Hypochondria: https://www.amazon.co.uk/dp/1781610797/ Hayley Green - Understanding M.E. - A guide for friends, family & Carers: https://www.amazon.co.uk/dp/1507646313/ ME Association - ME/CFS/PVFS An Exploration of the Key Clinical Issues - The Purple Book 2017 Edition: http://www.meassociation.org.uk/…/mecfspvfs-an-exploration-… Greg Crowhurst - Severe ME: Notes for Carers: https://www.amazon.co.uk/Severe-Me-Carers-Greg-Crowhurst/dp/1326271865 (Greg has amazing and useful resources on severe / very severe M.E!) C H Saunders - Understanding Severe ME: Essential Guide For Family & Friends: https://www.amazon.co.uk/…/1973344459/ref=cm_sw_r_cp_api_1J… There’s so many more out there (films & books) but I can’t list every one but these are what I remember so far that I find very useful for understanding! Thank you for reading!!! Please note : Sophie Cooklyn is featured in the BBC documentary “M.E. and me”, to be broadcast on May 8th 2018. More details here.
I didn’t believe so many people were being failed/ abused/neglected and mistreated, just for being “SICK”!

Sophie Cooklyn

Severe to very severe

M.E. is NOT ‘just’ M.E.

and it MUST be treated

differently!

I have very severe M.E. Which is a whole new level of suffering than those with mild and moderate! I believe that there are stages to this dis- ease just like that of cancer! I have  had each degree of severity and know it is much worse in comparison!

Mild is worse than not having

it!

Moderate is worse than Mild!

Severe is worse than Moderate!

Very Severe is worse than

Severe!

Each severity is worse than the

last!

More complications and problems arise the worse you will become and that should be known far and wide by EVERYONE that M.E. is not just a petty disease! But one that should be taken very seriously! This post is aimed for awareness and is aimed to help people understand what we live with day in day out! If you have some time out of your day, please read my write up! This will help you understand what me, Philip & Lucas have to ‘live’ with on a daily basis! What millions of us have to ‘live’ with and ‘fight’ every single minute that passes us by! It is very hard to say we are ‘living’ with this disease... for me.. it feels like nothing but death! That’s why I like to prefer to say we are ‘fighting’! My entire body feels toxic! Poisoned! And so very sick! I wake each day worse than the last! Wake each week with more complex symptoms! Symptoms that are too many and too extreme to describe! I think there are almost 70 symptoms recorded for a severe M.E. patient! I think I have at least 40 of those! (I didn’t count but knew I had over half on that list!)

Here is a list below of the MANY

complications and illnesses /

issues that arise with M.E:

Post-Exertional Neuroimmune Exhaustion Cognitive Dysfunction, Muscle Fatigue, Muscle Pain, Numbness, Intolerances, Pain - Chronic (widespread / Any- where / Everywhere), Sleep Disturbance, Ongoing’ Flu-Like Sickness / symptoms, Seizures, Involuntary Spasms, Disequilibrium, Vertigo, Deficiencies, Arthralgia, Shakiness, Tremors, Alcohol, Drug / Chemical Intolerances, Tender Cervical / Lymph Nodes, Susceptibility To Infections / Virus’s / Flu / Sicknesses, Eye Troubles, Sore Throats, Orthostatic Intolerance, Bladder Dysfunction, POTS, Osteoporosis, Osteoarthritis, Costochondritis, Multiple Chemical Sensitivities, Light / Sound / Touch / Smell / Mo- tion / Vibration Sensitivities, Allergies, Insomnia, Irritable Bowel Syndrome, Fibromyalgia, Severe Nausea, Restless Leg Syndrome, Hypersensitivities, Organ Failure, Muscle Wastage, Severe Itchiness, Migraines, Lactic Acid build-up, Neurological Issues, Double Vision, Swallowing Difficulties, Paralysis, Extreme Fatigue / Exhaustion, Inability To Walk / Eat / Sleep Or Wake / Wash / Lift Limbs, Pins And Needles, Painful Cramps, Blackouts, Numbness, Sweating, Inability To Moderate Temperature, Heart Failure / Attacks, Chemical imbalance, Endometriosis, ..... etc etc etc......!!! I don’t have all of these issues named, but I do have 'most' issues listed here! This list is practically ENDLESS!!! These are issues that I can only think of from the top of my head and there’s SO much more than this that can, will and are arising! Most of them happen with severe to very severe ME only, but even mild to moder- ate sufferers are known to be suffering so much more, as if they are dying with AIDS / HIV, Cancer etc. Those disease can kill too... but people who have had both cancer and M.E. have said themselves that M.E. is much worse for them to have! The reason being: you either die, or you take treatment that you get better with! With M.E. you are dying for decades! Specialists and scientists have said the same when witnessing dying patients without M.E. to those with it or both /multiple diseases... the lack of quality of life... well... it is next to nothing!!!                 Here are resources below to back up my statements: http://journals.plos.org/plosone/article/fi le… https://livingwithchronicfatiguesyndrome .wordpress.com/…/h…/ https://www.healthrising.org/…/chronic- fatigue-syndrome-wo…/ https://www.ncbi.nlm.nih.gov/pubmed/2 8070451 http://www.netdoctor.co.uk/…/is-me-re- ally-worse-than-cancer/ This disease has the poorest quality of life out of any disease or illness out there! So you can imagine the suffering of that alone! (Not that anyone would want to imagine or suffer any of it, but this awareness has to be made!) For myself... it is not get- ting any better.. so far... it’s only getting worse each day that ‘passes’!! It’s disheartening.. it truly is! But I’m strong willed! I will learn and teach. I will be my own advocate and keep fighting. I will keep speaking out! Awareness goes an extremely long way with this disease and it’s the best thing we can all do until we find the CURE mil- lions of us deserve!! We need more medical professionals to do the ‘correct’ research, studies and practical work for patients! We need more people to help fight for us! Especially anyone without this disease! We need better care! Doctors / GP’s must give home visits to the severely affected! We need so much more funding! We need to STOP neglect and isolation! We need to be believed and understood! It is a living death! Too much suffering, torture, torment, neglect, isolation and lack of understanding! Anyone of any age / race / gender / his- tory etc. can become sick with M.E. This disease does NOT discriminate! What is worse is finding out there is little to no help when fighting it! We are trapped in our bodies and watch- ing the world around us go on without us! We are neglected and isolated by every- one around us including medical professionals, scientists, friends, family etc. We are disbelieved by many but thankful for by those who chose to stay and also those who are making a difference in every single way no matter how small... it is appreciated so so much! We need more knowledge! Here is another brilliant resource on the fight we have to endure regarding CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy) ((The Significance to ME/CFS of the Land- mark Change to the UK Law on Consent)) http://forums.phoenixrising.me/index.ph p… Just sharing this post will do wonders alone, watching films on M.E. listed below, and reading the books I’ve also listed at the very bottom of this post This will also be very much appreciated! Our family and friends who care for us live in isolation and suffering too and they have to keep us alive! This post isn’t in any way aimed to be a negative one but this disease has very little positivity surrounding it. These are facts that need to be known by every M.E. sufferer, every single disabled person and carer, friends / family, the wider public, government, scientists, pro- fessionals of every single area and... YOU!!! No disease / illness / disability etc is nice to live with but I cannot emphasise how much stigma surrounds this particular one! I didn’t ever once think before I did my research, that there was such neglect in this world surrounding illness. I didn’t ever believe so many people were being failed / abused / neglected and mistreated just for being ‘SICK’! Every single major disease out there has funding / treatment / Biomarkers / cures... this one has been neglected and patients have been abused and mis- treated so badly by the healthcare system! It is disgusting that this has happened and is still happening! Medicine is failing us! Too many sufferers have been removed from their homes and treated as ‘psychi- atric patients’ Too many have died from M.E. itself and too many have taken their own life! Too many are left untreated and undiagnosed! Too many diagnosed way too late, un- able to recover and only gotten worse! (Myself) Too many have been told to exercise, been forced to do Graded Exercise Therapy and Cognitive Behavioural Therapy! (These have done more harm than good!) There have been too many cover ups and the NICE guidelines in the U.K. are still in review which need to be changed very quickly before more damage is done! Don’t let the politics scare you! It is ex- tremely important to learn what is happening. It is like the AIDS epidemic all over again! This disease is worse than any out there and there is little, lack of and no fund- ing all around the world! Millions are suffering and left to die! There are over 250,000 people in the U.K. ALONE diagnosed with M.E.!!! There are thousands / millions still left undiagnosed!! It occurs in outbreaks, clusters and indi- vidual cases! M.E. can be fatal! it is not a disease that should be taken lightly! it is a KILLER!!! There has been evidence found during autopsies to ‘prove’ that M.E. does in fact have a physiological/ biological cause. Extremely sick, very severely affected U.K. woman ‘Sophia Mirza’ was taken from her home and placed in a mental institution! She was institutionalised for 13 days! When she arrived back home after her mother fought for her to be back, she was much much worse!! Two years after taken from her home, her health had deteriorated so terribly that she developed intolerances to all food she ate, ear infections and severe pain! She was only able to consume small amounts of water but eventually, when she couldn’t fight any longer, Sophia had passed away at age 32 on 25th Novem- ber 2005! Her initial autopsy was inconclusive for her cause of death but the results of an inquest released on 13th June 2006 de- termined her cause of death to be acute renal failure and dehydration! During the inquest It was found during her autopsy that 4 out of 5 of her dorsal root ganglia showed abnormalities and inflammation and they had found changes in her spinal cord too! This was enough to prove that M.E. is in fact ‘Neurological!’ She was the very first woman in the World to have had her cause of death being the result of M.E.! CFS (Chronic Fatigue Syndrome) they in- stead decided to name her cause of death, because of the lack of muscle in- flammation in her body! But she did infact have ‘M.E.’!!!

ACRONYMS!!!!!

M.E. Vs CFS!!!!! CFS (Chronic fatigue syndrome) is ‘NOT’ M.E.!!! It makes me and many others question if CFS is a completely different thing! Eg. Deficiencies, low immunity, allergies, intake of aspartame, intolerances, sensi- tivities etc. These issues can all give symptoms re- lated to... M.E. Fibromyalgia, Lupus, Lyme Disease, Chronic Fatigue (chronic fatigue is a symptom in itself!) and many other ill- ness / diseases / dysfunctions! M.E. ... Myalgic Encephalomyelitis = My - Muscle Algic - Pain Encephalo - Brain Myel - Spinal Cord Itis - Inflammation Muscle pain and inflammation of the brain and spinal cord! If you have pain as a large feature, along with the torturous exhaustion, PENE, Cognitive issues as well as the many other main features that are required for diagnosis then you have M.E.. If you 'DO NOT' have inflammation of the brain and spinal cord, muscle pain, PENE, cognitive dysfunction, unrefreshed sleep, ongoing flu-like symptoms etc etc etc... you do NOT have M.E.!! Stop calling it CFS! It leads to so much misunderstanding / controversy for all of us who are terribly sick with M.E.! Get the correct diagnosis! Call it M.E.!!! Resource to back up: http://www.hfme.org/comparisonchart.h tm This is something that is starting to come into light a lot recently and I think CFS is a lazy acronym and causes a major mis- understanding for people who have M.E. The first outbreak of M.E. happened in 1934! It first appeared in medical literature in 1956! After so much controversy... M.E. was given a new name! ‘Chronic fatigue syndrome’ (CFS) Which appeared in medical literature, in the late 1980’s! It was made up by the Americans to fob people off and make their illness seem less debilitating for insurance and political purposes! It has had many ‘disturbing’ names! -Poliomyelitis -Royal Free Disease -Raggedy Anne Syndrome -Yuppie Flu -Atypical-Polio -Post Viral Fatigue Syndrome (PVFS) Still Used! -Chronic Fatigue Immune Deficiency (CFIDS) Still used! And many MANY more!!! I have a book which has over 90 names that were used! Many of which are still to this day being used... all around the world!! instead of M.E.!!! Many patients were diagnosed with ‘Hys- teria’ which is now named ‘Conversion Disorder!’ This name implies the M.E. patient suf- fers from psychiatric/ psychological illness! Implying that everything they feel.. is all in their head! Many (too many!) were sectioned! Put in psychiatric units, unable to see their loved ones! Too many have died as a result!! Want to know a disturbing fact? THIS IS STILL HAPPENING TO THIS VERY DAY!!! We need to correct the system! We need to call it what it really is and that is M.E. ALONE!!!! People need to stop using that term and start sticking with M.E and get diagnosed as M.E. You MUST get your doctor to change the term and STOP using CFS! (Or any of the other names that are being used instead of M.E.!) I absolutely hate that acronym!! CFS implies that we are just ‘tired’! We are FAR from that!! My doctor said CFS ‘before’ I was diagnosed! I corrected him to say M.E. and he doesn’t use CFS anymore! We need to change the stigma surround- ing it but first we need to stop that acronym itself! M.E. AND CFS.... THEY ARE NOT THE SAME!!! THEY ARE TWO DIFFERENT DISEASES!!! We cannot give up now! We must not ever give up hope! There has been improvement in many ways and I do hope they find a cure real soon before it is too late! I don’t know if there will be one in my lifetime but the research and clinical studies now have proven that progress is happening real fast! As spoken in this video.. in one year alone there has been outstanding progress and hope! NEVER GIVE UP HOPE!!! Medicine should never fail a patient! Medicine should be there to save its patient! It should be there to help many lives that need saving but we need funding and we need knowledge! We need it very fast!! We are the #MillionsMissing!!! Please read and share widely! There are much more videos and films out there as well as books and resources! I have listed a few extremely good ones below:

FILMS

Voices from the shadows (free to watch - long version can be watched by following easy-to-follow in- structions! Short version can be watched for free anytime) http://voicesfromtheshadowsfilm.co.uk/ What About ME? (Free to watch on Amazon Prime) https://www.amazon.com/What-About- ME-Susan-Douglas/dp/B072L2MCX5 Forgotten Plague (Can be bought on DVD / ITunes / Google Play) http://www.forgottenplague.com/ Unrest (free to watch on Netflix but can be bought on DVD / ITunes / Google play) https://www.unrest.film/

Books

Jodi Bassett - HFME Caring for the M.E. patient: https://www.amazon.co.uk/dp/14452963 9X/ Dr Sarah Myhill - It’s mitochondria, not Hypochondria: https://www.amazon.co.uk/dp/17816107 97/ Hayley Green - Understanding M.E. - A guide for friends, family & Carers: https://www.amazon.co.uk/dp/15076463 13/ ME Association - ME/CFS/PVFS An Explo- ration of the Key Clinical Issues - The Purple Book 2017 Edition: http://www.meassociation.org.uk/…/mec fspvfs-an-exploration-… Greg Crowhurst - Severe ME: Notes for Carers: https://www.amazon.co.uk/Severe-Me- Carers-Greg-Crowhurst/dp/1326271865 (Greg has amazing and useful resources on severe / very severe M.E!) C H Saunders - Understanding Severe ME: Essential Guide For Family & Friends: https://www.amazon.co.uk/…/197334445 9/ref=cm_sw_r_cp_api_1J… There’s so many more out there (films & books) but I can’t list every one but these are what I remember so far that I find very useful for understanding! Thank you for reading!!!
 With M.E. you are dying for decades!
“It should be known far and wide by EVERYONE that M.E. is not just a petty disease!”
I didn’t believe so many  people were being failed/ abused/neglected and mistreated, just for being “SICK”!
Please note : Sophie Cooklyn is featured in the BBC documentary “M.E. and me”, to be broadcast on May 8th 2018  More details here.