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Sheffield ME & Fibromyalgia Group
Великобритания
Добавлен 2 мар 2015
Benefits Info Session 30 April 2024 Final
This Benefits and Social Care Information and Q&A session provides an update on some key changes announced recently, focusing on:
- Spring Budget on 6 March and what this means.
- Changes to the health assessments for PIP/UC.
- Universal Credit Migration
- Cost of Living
The second half of the session was a Q&A.
About Sheffield ME and Fibromyalgia Group
Sheffield ME and Fibromyalgia Group is a UK charity supporting people with ME/CFS, fibromyalgia and long covid in South Yorkshire and North Derbyshire, and raising awareness of the conditions. Find more information about our charity and its activities at www.sheffieldmegroup.co.uk/
If you wish to donate a little something to support our work, ...
- Spring Budget on 6 March and what this means.
- Changes to the health assessments for PIP/UC.
- Universal Credit Migration
- Cost of Living
The second half of the session was a Q&A.
About Sheffield ME and Fibromyalgia Group
Sheffield ME and Fibromyalgia Group is a UK charity supporting people with ME/CFS, fibromyalgia and long covid in South Yorkshire and North Derbyshire, and raising awareness of the conditions. Find more information about our charity and its activities at www.sheffieldmegroup.co.uk/
If you wish to donate a little something to support our work, ...
Просмотров: 597
Видео
Talk - Working, or returning to work, with ME/CFS, fibromyalgia and/or long COVID
Просмотров 2407 месяцев назад
A presentation and Q&A with Jon Dale, Senior Adviser at Sheffield Occupational Health Advisory Service (SOHAS - www.sohas.co.uk/) about support available to stay in work or return after a period of sickness absence. Including advice and information on Access to Work and reasonable adjustments. About Sheffield ME and Fibromyalgia Group Sheffield ME and Fibromyalgia Group is a UK charity supporti...
Gut Microbes as Cause and Treatment of ME/CFS
Просмотров 1 тыс.11 месяцев назад
SCIENCE FROM YOUR SOFA: Research update on Gut Microbes as Cause and Treatment of ME/CFS Guest speaker: Professor Simon Carding, Research Leader, Gut Microbes in Health and Disease, Quadram Institute. Evidence suggests ME/CFS patients have immune abnormalities including immune deficiency and autoimmunity that may be related to or perhaps even driven by disturbances in the gastrointestinal tract...
Vascular pathology in post-viral conditions: the role of Microclots
Просмотров 6 тыс.Год назад
SCIENCE FROM YOUR SOFA Research update on microclots and how they may relate to long term symptoms in long COVID and ME/CFS. Guest speakers: Distinguished Professor Resia Pretorius of Stellenbosch University (South Africa) and Dr Caroline Dalton of Sheffield Hallam University This event was hosted by Sheffield ME and Fibromyalgia Group, a UK charity supporting people with ME/CFS, fibromyalgia a...
Challenging a benefit decision
Просмотров 1,3 тыс.Год назад
Recording of our online benefits info session on the 21.11.2022, providing information on mandatory reconsiderations and appeals for benefits. Facilitated by Ellie, one of our benefits advisers.
PIP reviews explained
Просмотров 27 тыс.Год назад
Recording of our online benefits info session on the 13.10.2022, providing information about PIP reviews. Facilitated by Ellie, one of our benefits advisers.
New PIP claims explained
Просмотров 13 тыс.Год назад
Recording of our online benefits info session on the 11.11.2022, providing information to those thinking of making a first PIP claim. Facilitated by Ellie, one of our benefits advisers.
DecodeME - the world’s largest genetic study to understand ME/CFS
Просмотров 1,5 тыс.2 года назад
Presentation and Q&A with principal investigator Prof Chris Ponting. This project aims to find genetic causes of why people become ill with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS). This research should help the understanding of the disease. The study is being led by Professor Chris Ponting of the Medical Research Council Human Genetics Unit at the University of Edinburgh. ...
Q&A on Long Covid with Gez Medinger
Просмотров 2,7 тыс.2 года назад
We were delighted to host investigative science journalist, author and filmmaker Gez Medinger for a Question and Answer session about Long Covid. The audience comprised people living with long covid, professionals and carers. Questions were collated before the event and also asked live to Gez. This recording is suitable for patients, families, health professionals, local support groups, and the...
Making the new NICE guideline work for people with ME - Dr Charles Shepherd
Просмотров 7892 года назад
Making the new NICE guideline work for people with ME - Dr Charles Shepherd This event was particularly aiming at healthcare professionals. The new NICE guideline was published in October 2021 after years of campaigning from patients and advocates. It covers the diagnosis and management of ME/CFS, and contains important changes compared to the previous version. Dr Shepherd has produced a handou...
Progress and challenges for a ME/CFS diagnosis - Prof Ron Davis and Janet Dafoe
Просмотров 6 тыс.3 года назад
Progress and Challenges for a Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Diagnosis - with Prof Ron Davis and Janet Dafoe Abstract: A significant portion of the Stanford Genome Technology Center’s advanced technologies are being focused on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), which afflicts up to an estimated approximately two million people in the United Stat...
Fundamentals of Fibromyalgia - Des Quinn from FMA UK
Просмотров 6993 года назад
This is a presentation on the basics of fibromyalgia and how it affects the large community of people who live with it every day. We will dip into some of the science of fibromyalgia and the research that underpins what we know of the condition today. We will also speak about the charity FMA UK, its mission and its activities. Relevant for anyone who wishes to be introduced to fibromyalgia, or ...
Marie's headshave
Просмотров 7703 года назад
In May 2021, one of our members, Marie, shaved her head to raise money to fund accessible art classes for people living with severe ME, surpassing her goal of £1200.
Q&A on fibromyalgia with Cort Johnson of Health Rising
Просмотров 8323 года назад
Cort Johnson, founder and director of Health Rising (www.healthrising.org/), presents the latest research on fibromyalgia and answers your questions. This talk was hosted by the Sheffield ME and Fibromyalgia Group. www.sheffieldmegroup.co.uk/ Additional resources kindly shared by Cort Johnson: Neuroinflammation Fibromyalgia, Chronic Fatigue Syndrome, Gulf War Illness - the Widespread Neuroinfla...
Metabolic health and strategies for managing body weight
Просмотров 993 года назад
Isabel and Sue talk about metabolic health and how to manage your body weight
How to make the most of your food at home
Просмотров 1123 года назад
How to make the most of your food at home
Nutritional support for energy production
Просмотров 7113 года назад
Nutritional support for energy production
POTS (a remarkable condition) - Talk by Dr Sanjay Gupta
Просмотров 65 тыс.3 года назад
POTS (a remarkable condition) - Talk by Dr Sanjay Gupta
Singing group Thursdays 11am - Sheffield ME and Fibromyalgia Group
Просмотров 2933 года назад
Singing group Thursdays 11am - Sheffield ME and Fibromyalgia Group
Christmas storytelling by our charity's Patron Berlie Doherty
Просмотров 453 года назад
Christmas storytelling by our charity's Patron Berlie Doherty
Discussion with Dr David Tuller on the NICE draft guideline for ME
Просмотров 1083 года назад
Discussion with Dr David Tuller on the NICE draft guideline for ME
Seeing the big picture: ME, Fibromyalgia, MUS, FND and Long Covid - Dr Diane O'Leary
Просмотров 7413 года назад
Seeing the big picture: ME, Fibromyalgia, MUS, FND and Long Covid - Dr Diane O'Leary
A secret weapon - Energy management in chronic illness
Просмотров 4984 года назад
A secret weapon - Energy management in chronic illness
ME/CFS in children and young people 24-09-2020
Просмотров 7574 года назад
ME/CFS in children and young people 24-09-2020
#MillionsMissing Sheffield 2020 Video of Livestream
Просмотров 1114 года назад
#MillionsMissing Sheffield 2020 Video of Livestream
Gut Microbes in Health & Disease with Prof. Simon Carding
Просмотров 2,7 тыс.4 года назад
Gut Microbes in Health & Disease with Prof. Simon Carding
Can you believe I almost passed this video by thinking it was OUR Sanjay Gupta the CNN big pharma shill in the US thank goodness I looked twice
This guy is everything that distinguishes physicians who want to relieve suffering as opposed to those who just want to relieve your insurance company of a ton of money
It felt so good to hear you say that showering is energy intensive. I'm always exhausted after a shower. Plus the water hurts sometimes. I have a handicapped parking tag and you made me feel better about having it and using it.
How can contact you.. I have chronic symptoms and need help please
Thank you thank you thank you for this. You have no idea what this video meant to me. 🙏
I was refused pip a few years back, I recently asked for forms to be sent out, I didn't fill them in, I now have an acessment this week, does anyone know how this works
Wow the other, I am not crazy, on top of 4 autoimmune conditions realising that this also is part of what I have been living with and telling drs who don’t believe me 💚💜💚💜
Amazing info thankyou Gez x
Exercise is niot beneficial in fact detremental to us who suffer with CFS/ME.
can you explain please how to draft a letter of support asking for grounds for my MRN appeal please /AS sruggleds all week and still not don it due ot my visual stress and mental stress congw=ential hip disorder shallow hip , lower back, balance involuntry tic and jerk since, complex Sp LD , chronic arthitis and brain fog, tenddonits, planter faccittis asthma ibs agnina , ADHD anxity and depression. Am extreamly exhausted and trying to cope with mutiple bevement since 2017 . i outline these and listing all spld and recent condition falls x5 since pip appilcation in jan and told no only 2 point for reading help. this bloody proces has drained me , am very unstabke mentally , and igs so uneccessary , unlawful and wrong on many level. As its killing peoplle , this scandel is worse than the post office scandal . in that more thosand of peolple are pssing away , why did a tory and possbile labour goverment pay the lying USA swine whosay this sysytem is working and costung tax ayer well over £52million for a broken system they installed , and llied abiout SHAME ON THE LOT OF YOU as you have BLOOD on you ALL.
Is there any way to download a transcript of this video? Great information!!! Thank you!!!!
I've come to this video after suffering from symptoms like POTS for about 2 months now. It was scary to have my heartrate spike up, going to the ER, not knowing what I had, etc. Working on getting a diagnosis for POTS, but the soonest I can get verified is mid November. I've been trying my best to hydate and take some salt tablets, and keep mobile.
How are you doing right now??
@@zory1111 I'm still having a high heart rate when I'm up right, although I've just been drinking plain water until I get an official diagnosis just so I don't overdo it with the sodium.
39:37 tilt table testing - i got the opposite! My heart *rate* did change - but even MORE my blood PRESSURE goes crazy!
37:17 i tried the tryptase test and found it useless bc I have to get to the Phlebotomist within 30 to 40 minutes of symptom onset and that's usually late in the afternoon and they close at 5pm !! I tried ... useless. The local Dr. had ZERO other options he claimed to have to offer. So maybe I have MAST cell activation- but there are no doctors accessible within the state of Virginia I can find that take medicaid.
23:23 Dr Benjamin Levine found that we have smaller hearts, less blood could lead to many of these symtpoms of lack of blood to the brain. Exercise 3mo thru a "graded exercise protocol could get about 12% increase in heart size (muscle mass) and 7% increased blood volume."
29:05 MAST cell activation
Jump to 8:00 if you are here to understand what POTS is all about for a loved one (or co-worker , partner etc.). I appreciate the 1st 8min where he shows us his own evolution as a Dr. - and - I suspect many of us who want others to understand what its like to try to be a part of others lives with POTS would benefit from skipping the 1st 8 minutes .
Interleukin -7, high antibodies, please take a look at long covid and POTS sufferers. You are not the only doctor looking at this.
1:24:00 Your compassion is incredible. Bless your heart.
Yes! Hormonal changes are huge! Right before menstruation, longhauler symptoms like muscle weakness & POTS surge to the point of disability. Hormonal pill greatly reduces symptoms & restores my health to the point of almost complete functionality. Had been on the bc pill for ten or so years, but went off of it preCOVID. Now back on it & it *greatly* reduces my POTS symptoms. Life-changing. Thank you for confirming this & please tell everybody! :)
Wonder what the male hormonal equivalent is?
Interesting! I’ve been thinking that’s what caused my symptoms. I’ve been off BC pill for 11 months before I started having POTS like symptoms. I have PCOS so that’s why I was put on bc pill but then decided I want to manage my PCOS naturally. In the last month, my heart rate shoots up so high during the night (while lying down) so that I have not been sleeping for like a month now.. it’s absolutely debilitating. I went to ER twice, did bunch of tests, and nothing would explain why I feel this way. Though they discharged me a cardiologist referral. Still looking for answers :(
Hopefully Jesus will save my health
God will heal me one day amen
Don't count on it. If there's truly a God, he sure allows a lot of suffering in the world.
I was born I'm with this I was in 15 Forster Homes and my adopted parents said they never would have adopted me if they knew how sickly I was a kid I and still am. And then I got denied for 13 years for SSI and repeatedly tried to kill myself because I was kicked out of my house at 18 for whatever reason, and was to sick to even get out of bed and still am let alone work. I finally got on ssi because of the effects it's had on my body in my 3s❤0s has caused me severe mental and emotional issues were I spent 70 ish times in mental institutions and behavioural instations. I never got to live out my life instead I like my "angel mother from Philadelphia" I had to have my entire life spent in bed and all my relationships were only spent with whoever would show up and hangout. 😢
Have had this for years with all sorts of dx from mental, nothing, to finally autonomic disorder. Qigong, yoga, selective healthy eating, supps- well researched, meditation, energy medicine have helped me 99% more than gabapentin, blah, blah. I just love your purity intention to know & serve people the truth. Now have heart failure & just know it is related.❤❤❤
Do you mind sharing your supplements regime? I'm just dealing with this now
Regarding tilt table, esp. for kids: it is not necessary to strap someone to a tilt table. You can just have the kids lie down for 5-10 min, monitoring hr and bp, then have them get up very quickly and again monitor hr and bp. If hr shoots up more than 30 beats per min while bp stays steady, it’s Pots. If bp plummets, it’s orthostatic hypotension.
I was finally diagnosed with Pots after suffering for 2 years after Covid. Unfortunately, I was told to decrease my exercise and increase salt and that was it. Even though I have the Pots black on white, my other doctors I tried to see about MCAS and other issues often associated with Pots still dismissed me. Am printing out all the studies I have read and going back next week. Really hoping they can do something because I cannot and will not live this way for another 50-60 years. With Ivabradine, I can swim a bit without a HR of 180, but now the fatigue and brainfog are so bad again, I can’t work at all anymore. It’s ridiculous.
Stay positive. We are too hard on ourselves.
Wow i really wish my daughter could see soy😢meone like Dr Gupta, he really understands n explains everything
I now have this 5 months after gastric sleeve and 115lb weight loss. It is constant when standing I go black for 4 seconds and hold on to a wall then it leaves. I fainted woke up on the floor. Went to ER. Nothing wrong but they diagnosed out. My hematocrit has always run 15 . So blood volume is higher. Anyway the surgery did this and it's been happening for 5 months it's worse in heat.
On Midodrine here FANTASTIC DRUG ! ❤❤❤ I think slowly getting my life back…..been hell for years with POTS. A MIRACLE I NEVER FELL DOWN OUR 2 flights of stairs in this house. Felt drunk half the time couldn’t walk straight. YEARSSSSSS WITH POTS. Lower dose did zilch for me , got on to 10 mg 3x daily fast. No results on lower dose. Sleep on an incline pillow.
The more i search for medical content the more i find from this dr. He is what the system should be .
You are very rare there does not seem to be many of you that have time for the patients these days and that is if you get anyone to see you in the first place.
Vericose veins are awful and swelling started about 2 1/2 wks ago F’myalgia RLS wght dropped to 97 lbs now 110 inflammation and tt very little fragile crepy skin as my gma had Cardiovascular issues and don’t have to do much at all to feel dizzy Light sensitivity RLS struggle !! Heart palpitations big time yes breathlessness!!! POTS I’d say absolutely!!! Ant sleep well IBS Yessssssssss!! Oh lord help me Hot cold inflammation heart rates feel like I’m dying. Scoliosis Eds Sick since I was a lil girl bowlegged tmj hypertension ‘hypo’everything exhausted My stomach hurts and swells in front of my eyes. Extreme constipation !!Years!!! 33 + 😲😵💫😢
Look into MCAS. Anti histamines and mast cell stabilizers can help. It's a triad with POTS, EDS, and MCAS.
Also having a lot of jerking episodes. It comes out of nowhere
I'm not trying to be disrespectful but as I was saying I have to have neck surgery and the doctors, a doctorioral site and a gentleman that was giving a lecture on it said that if there is a shift in the neck that it can lead to they symptoms I'm having as well and possibly go away when I have the procedure done. I do have the problems of being cold and hot but the more I exercise the better I feel. So, not always does the exercise intolerance coming to play. There are time though I can't get enough sleep and sleep for days but that also goes back to the thyroid disorder I have. So, again please Sir can you do more research on this and redo you podcast or question and answer on this? I listened to you finely and not everything you are saying line up for everyone
Sir, I may not be as educated as you are bit I suffer from POTS myself and a lot of what you are saying don't work for myself and I also don't agree with. For me the lower my blood pressure is the better I feel as well as the higher my heart rate is I feel butter but at the Sametime I do have the cloudiness and my adhd medicine helps me. I also can't up my salt intake like you are saying to do because my BODY WILL NOT release the fluids properly and I have to take a direct. But I also have problems with my thyroid and other underlining health problems. And, I'm not always effected by it sometimes I'm okay and bam out of no where I feel yucky again and it last for awhile, than goes away again or last along time. Some of what you are saying I agree with but there's a lot that's being said here that don't help and makes things worse for me. I've been diagnosed with POTS for over 2 years now and co.e to find out it's been longer than that and wasn't realized. When what you are saying is a normal blood pressure is high for me and I'm sick really bad sick. I feel like I'm in a dream type state or a cartoon like state and nothing makes sense to me. Especially when I'm on heart medicine. So, please can you take a look at all the different underlying health conditions that other doctors say goes hand n hand with this syndrome?
Is there a electronic version of this form? I have difficulty holding a pen to write but can use voice recognition if form is online? Ps I know PIP for is online I am asking about review form.
Hello, unfortunately there isn't a DWP 'approved' electronic version, however our advisers advise that you type your answers on a word document making sure you use the relevant question number and attach this to the review form. Making sure that in the DWP paper review form it is clear that they should refer to the attached and still sign the form where needed. Best wishes
Wow you are an amazing Dr , I am a 3rd generation within my family, with fibromyalgia, hypermobility, gastrointestinal and ibs issues, we are constantly anemic and we are getting worse especially my mum
I’ve had POTS for over 25 years and still can’t find a way to control it.
The GPs here only deal with diagnoses they punch up in a computer specific to their iuhealth group think AND NO MORE..sad and frustrating. They don'tclike patients who give up on the 15 min 'appointment' with the intern aged doctor goes to ask the professor, essentially, about correct diagnoses for a patient he hasn't even seen...older people just suffer because they have been taught to believe the doctor without question and to accept ' you are just getting old so...' as a result, when I do my research and call them for additional appts armed with data...it is exhausting...and of all things after a couple of years my back pain may have tirned out to be a ureter infection somehow unseen.
Is there a easy way to figure out if it's pots or anxiety? The symptoms are almost exactly the same?
Hello, PoTS UK has some useful advice about how the condition is diagnosed: www.potsuk.org/about-pots/diagnosis/, which would identify if it is PoTS or something else.
I am diabetic, they blamed diabetes. It may be related but I quit drinking after years when it first happened because I always feel drunk. It may be related to malnutrition due to a defective gut biome. My doctors have barred me for questioning their resolve
It was only after LAD stenting did my heart beat strong enough to feel the pulse in my head did I realize what was happening. As I stand, my heartrate skyrockets and my blood pressure plummets
Im a 73 year old woman. I got covid for the 3rd time in march. Sence than i have been suffering fron all the systomes you talked about. It has taken all my energy to type this. What is going on. I was VERY active 3 months ago i could out work any man. Now im weak as a kitten.
COVID 19 is not just a cold and each time we get it you get more damage! Check out M.E/CFS to learn more about your condition...
Is there a c1q deficiency connection? My daughter also has mass cell disease and ehlers danlos, now lupus
Who's still alive in 2024
Outstanding video. The most helpful thing I’ve heard applauding you Dr.Sanjay
I have pots and my blood pressure drops when I stand and my heart speeds up I take metoprolol and feel so much better
Thank you for a most informative talk! In the 15+ years that I’ve had POTS, I’ve never heard any of this, or had any help from my GPs. Self help and Dr Google have been my only remedy. Some of the advice given is in direct opposition to that given for managing my heart failure and damaged mitral valve, e.g. use of diuretics/gliflozins. I think I’ll just have to carry on putting up with the POTS 🙃
Have you been evaluated for Ehlers Danlos? Mitral valve problem + pots is usually a dead giveaway
@@Chris-g9i Thankyou, I have a friend with ehlers danlos and don’t have any of her symptoms. I’ve had m.e. for over 25 years and heart disease for about 15 years. The mitral valve damage happened after heart attack #8. I’m presently dealing with the surgical impacts of Dupuytrens disease, so collecting yet another medical label isn’t on my agenda 🙂.
@@corrinneloudon525 Oh, very sorry to hear that. Just fyi, there are 13 different types of Ehlers Danlos, so the friend comparison might not be the best way to self diagnose. Good luck; sounds like you’ve been through a lot.
Please put another video on RUclips!! This one is for Pots patients and there are many more of us with other problems who enjoy your presentations.