Dr Charles Lapp - An overview of ME/CFS Diagnosis and Management

Dr Charles Lapp 6th April 2017 Auckland Meeting -- An overview of ME/CFS Diagnosis and Management .

[@youknowcrimedontpay9257]

Brutal illness that I've had since 1982. 39 years which has taken all quality of my life away. Hope they find a cure for the generations to come. Today is Feb 5th, 2021.

[@dawnralphson8173]

You have my utmost sympathy. Only a 20 year veteran of this nasty condition, I'm lucky that I'd had my youthful years, children and an excellent partner. After struggling to stay at work at first I couldn't do it anymore. Friends and family drift away, invitations fade off coz we can't go 9/10. I've had to make a limited new life(4 grandkids that I've rarely held in my arms for example, but I have arms, so I'm better off than some, I've had to overcome my anger, bitterness and resentment at M.E to continue) like you say Please let a cure or effective treatment for future generations come soon. I wish you well. May 2021.

[@youknowcrimedontpay9257]

@@dawnralphson8173 Bless you. Will forever remember the kind words you sent me..

[@jewelleryaddict]

yep had since 85 and diagnosis 1988. this guy has lots things i have come up with on my own and a support group i started and facilitated 23 yrs.

[@suzannethompson9261]

Let me just say thank you. In the Midwest there are no doctors that will even acknowledge the diagnosis of cfs. And as a disabled nurse practitioner I have had to diagnose and treat myself. I finally read about NADH and magnesium and vitamin D which has really helped. Then I got Ambien so I could at last sleep.. and I started to use TED hose to help with the POTS . Also I discovered that the keto diet helped a little. I also began to get support from my local priest. it is so much a relief that someone believes that this illness is real.

[@janisedmondson7132]

As I've watched these very helpful videos, I recline with my iPad. But I wonder how can the people in the audience who have ME/CFS, tolerate sitting upright for the entire session....even as Dr. Lapp states sitting upright is not tolerable for ME/CFS patients. We have lost so much...no church, no movies, no classroom settings. Thankful Dr Lapp is trying to help us.

[@poobyrooh07]

I was in the audience, I have fibro and it was pretty difficult to sit upright even those chairs helped little. It was a very good session. I think most of us were so absorbed in what he had to say. Some if not most of the people there are care givers/ family for those who could not attend

[@brendanrobinson2415]

Hi Janis, I too can't stand or sit for long However found compression pantyhose grade 3 - 4 (Hard to get on) but that raises the blood pressure. I also drink more water and take a nitrate medicine and propranolol (which sounds counter intuitive) those meds dilate the blood vessels to get good blood flow around the body, but the compression tights bring the pressure back up. So it's like a balance and does help. Drink plenty of water and check your electrolytes too

[@closethebook]

i think you shouldnt judge actually. We are all differnent and we have good days and bad days, it annoys me that you imply these pooor peopel sitting here dont have ME because you can see them sitting up right. It is that sort of wonky thinking that makes it really hard for any of us to be taken seriously. just because they are sitting up right does not mean they are not or wont be suffering as a result later.

[@jmar8507]

It's just like he said, 25% of ME patients are bedbound, 10% are still able to work. The rest of us fall somewhere in between. I can sit although it does work against me and wear me out but I have a hard time standing for longer than a few minutes, going places, etc. I had to quit my job 4 years ago after managing to keep it for 16.5 years because I could not do it any longer even working from home.

[@jewelleryaddict]

@@poobyrooh07 I did support group many years we encouraged people to get up and move around stretch etc.. also took break for food and bathroom halfway thru. helped alot. we also had pillows to prop selves up in uncomfortable chairs.

[@jeremybearman2722]

simply marvelous lecture

[@KittenCasserole]

Thanks so much for this excellent video

[@freiagalacar3465]

I have all those syptoms

[@shae2531]

I wish my doctors could all see this. I went undiagnosed for 2 years...

[@clayjohnathan6734]

Dunno if you guys cares but if you are bored like me atm you can stream all the new movies and series on instaflixxer. I've been binge watching with my brother these days :)

[@bowiejudah1617]

@Clay Johnathan Yup, have been using instaflixxer for months myself :)

[@maysonavi6163]

@Clay Johnathan definitely, have been using InstaFlixxer for since december myself :D

[@lucienburke9652]

I wrote an essay on my own personal experience with ME/CFS and all the relevant research I could find. You can read it here: atlasbiologic.com/2017/06/02/88/ I hope it helps anyone who finds this.

[@juliefarrell3957]

I was agreeing with everything until you recommended cbt, 😔

[@starfly7]

Same. Nobody is perfect though, and he did modify that to say Coaching b/c recovery is a slow process and ENCOURAGEMENT helps.

[@deeber35]

Dr Lapp clearly never saw severe patients, or even those of us who were not extreme but became so over time. He makes it sound so easy - just do a little more each day, and presto, u are an Olympic athlete. Or u are better. But PEM makes this impossible for some. In fact, I can do less and less over time, despite trying, which is why I am so ill today. Please don't give the impression u just have to work a bit more each day and all's well. Dangerous, simplistic thinking.

[@ednamoorern]

Deeber35: did you listen to the first 2 minutes of the video? He clearly stated that about 20% of patients are bedridden with severe symptoms and that they are a "whole different ball of wax." In otherwords, they have to be addressed differently than the "average" ME/CFS patient - which is what his talk here is addressing. I saw Dr. Lapp for 10 years at Hunter-Hopkins, and I can tell you, he's not only incredibly intelligent, but he is incredibly kind. And he has indeed worked with patients across the entire spectrum of ME/CFS. I hope you find a provider who can help you as much as Dr. Lapp has helped me. Wishing you all the very best and hoping for improvement in your symptoms.

[@amazingsoapfarmyardcollect7406]

@@ednamoorern People with M.E. Cringe with the graded exercise rubbish and the fact that insomnia is the key symptom and briefly mentioned M.E. IS A SLEEP DISORDER THAT EFFECTS THE WHOLE BODY Sorry i have to point out The kitchen table with a few items is the least of my worries .. take the M.E financial diet its hell if your ambitious

[@dirkkatz172]

the neighbours microwave ?

[@RSEFX]

Kratom can help a lot. Doesn't cause anxiety but gives an energy boost. Also helps to nullify pain quite well,, and can help with sleep---depending on which type of leaf you take, red, green or white. It is legal in most states and not terribly expensive, and one need not take a lot of it to receive its benefits. I know a number of people who take it to deal with ME/CFS, and it has served them well. Very low tendency for addiction, but you need to be informed about this area: Addicts have also used Kratom to help them get off of hard drugs. Kratom is a leaf/can be considered a herb. (For more info look up the American Kratom Association.) It has helped me: I've suffered with ME/CFS aka SEID, since 1986.

[@hopeodyssey]

I REALLY WISH YOU WOULD NOR CLUMP CFS TOGETHER WITH ME... THIS IS SO WRONG!

[@poobyrooh07]

every body who has any of these can single themselves out if they wish

[@sheilasingleton7904]

hope odyssey Sadly, by virtue of symptoms and diagnostics, they are interchangeable terms with the same meaning. I agree that it’s NOT a good thing. Fibromyalgia often gets lumped together in the mix as well.

[@lorinewcomb4717]

hope odyssey its the same thing just do you know. Xoxo ❤

[@SignsAllAround]

hope odyssey : Indeed! The Hummingbirds' Foundation for M.E., hfme-dot-org Sadly, the medical industry has conflated the two concepts, and divorcing them now within that context is probably unlikely.

[@youtubetroll6620]

The body clock switch has been triggered, you are simply dying... period...

[@dirkkatz172]

Dear, now the cause of Chronic Fatigue Syndrome is found: radiation of microwave-oven(magnetron).To stop you have to eliminate the oven out of the house.The plug out of electricity net because the oven has also radiation when it is not in use.And out of the house because the oven has a high voltage capacitor.The distance between an oven and a person is very important.After a 2 weeks without microwaves health becomes better.(total recovery=2months).The victims are more sensible and also the distance between victim and oven is important.(Also possible: nightmares, change of character)Most people with a microwave arent chronically ill because some people are more sensitive for microwaves, also the distance person/microwave is very important. The oven in another place is more safe. The radiation become less when the oven gets older.Some ovens give less radiation then others. In Russia the less radiation is allowed by law.BEANTWOORDEN

[@SignsAllAround]

There's been no microwave in my house for at least 15 years. I have officially diagnosed moderate to severe CFS for the past 7 years and CFS symptoms for far longer than that. In my case at least, there's no connection to microwave use. So many theories, but really no one knows yet what causes this condition/disease.

[@dawnralphson8173]

Don't like being rude but Shut Up. That's not the cause or reason.

[@davidkruse4030]

No offense you sound like a nutcase.

[@mihakavcic7237]

I will find you...

[@allie54774]

​@@SignsAllAround I was going to say we got rid of ours years ago & im still poorly 😅😢