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Myalgic Encephalomyelitis Community

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Tips on how to manage a trip from UK to NZ with CFS

Hi, I've had CFS plus other chronic conditions for 24 years. Just had one total knee replacement with another to follow. Needless to say I've crashed. I really...

Hi, I've had CFS plus other chronic conditions for 24 years. Just had one total ...

•6 months ago

Sound Familiar?

Hi everyone! Hope you're all well and apologies for the oncoming rant. I've been having musings about potentially having ME for a while now but getting a...

Hi everyone! Hope you're all well and apologies for the oncoming rant. I've be...

•10 months ago

New and need help

Hi all, I should say I haven’t been given a diagnosis however my GP has suggested that this may be the cause. I had a viral infection two months ago which...

Hi all, I should say I haven’t been given a diagnosis however my GP has suggeste...

Hatwindowwindow4

•1 year ago

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Flu season here!

Hello folks, I'm interested to know if long term ME sufferers end up with a totally weird immunity. I'm in my early 70's, developed ME following viral...

Hello folks, I'm interested to know if long term ME sufferers end up with a tota...

•2 years ago

CFS Relapse

Hi I'm new to the group so please bear with me. I have been managing my CFS very well for the last few years but after having my Gall bladder removed earlier...

Hi I'm new to the group so please bear with me. I have been managing my CFS very...

•2 years ago

New here :) Asking about referral process and what to expect

Hi everyone and good morning. I have a long history of anxiety, depression and stomach issues which have never been sufficiently 'helped' through medication...

Hi everyone and good morning. I have a long history of anxiety, depression and s...

•4 years ago

Amitriptyline for moderate pain side effects

Hi, I’m a long term sufferer of ME/CFS & Fibromyalgia. My all over pain has increased so I’ve been given Amitriptyline 10mg. I’m so sensitive to new meds I’m...

Hi, I’m a long term sufferer of ME/CFS & Fibromyalgia. My all over pain has incr...

•4 years ago

Regenerus Adrenal Hormone Report saliva

My results for the above test are depressing. 1st thing 5.3 nmol/L Range 14.0 - 25.0 noon 3.4 5.0 - 10.0 evening 1.3...

My results for the above test are depressing. 1st thing 5.3 nmol/L Range 14.0 - ...

•5 years ago

Daughter diagnosed CFS-ME, struggling with professionals different views and attitudes.

in short approx. 2 years ago our now 7 year old started to become exhausted constantly complained of pains all over, struggled with infection after infection....

in short approx. 2 years ago our now 7 year old started to become exhausted cons...

•6 years ago

Newbie here.Why am I so sleepy?

I have had ? ME ? Addisons? POTS ? anything you want to insert here!! for a few years now although the Drs I have seen cannot seem to decide what is wrong with...

I have had ? ME ? Addisons? POTS ? anything you want to insert here!! for a few ...

•6 years ago

Band of fire

Hi all, Hope everyone is managing to cope today, I have a question for you all, I have found that when i'm laying flat I can't raise either of my legs up all...

Hi all, Hope everyone is managing to cope today, I have a question for you all, ...

•6 years ago

Graded Exercise Therapy (GET) is declared ineffective and potentially harmful for ME CFS patients

Wow! As a physio I never understood why the fatally flawed PACE trials and others were not judged harshly by Cochrane and other safeguards of science. But...

Wow! As a physio I never understood why the fatally flawed PACE trials and other...

•6 years ago

Temperature veering from 32-35 degrees

Hi, I'm the mum of a 27 year old female who has been having various symptoms including exhaustion and aching all over. CFS is now being considered, as nothing...

Hi, I'm the mum of a 27 year old female who has been having various symptoms inc...

•7 years ago

Briefing document from Invest in ME Research. An appalling state of affairs.

This is a long document clearly written. You can scan through and see how many failures are recorded against the UKs own guidelines and statements. A briefer...

This is a long document clearly written. You can scan through and see how many f...

•7 years ago

Westminster debate on M.E.

This is a linke to ME missing and the debate in Parliament soon. Also a link to contact your MP to ask them to attend....

This is a linke to ME missing and the debate in Parliament soon. Also a link to ...

•7 years ago

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ME-sympathic doctor needed

Can anyone recommend an ME-sympathetic GP in the St Austell, Cornwall area? My previous GP has sadly left.

Can anyone recommend an ME-sympathetic GP in the St Austell, Cornwall area? My p...

•7 years ago

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M.E. on You & Yours

12.15 today Dr Shepard was talking about M.E./CFS and lots of folk phoned in who have it. Well worth a listen on iplayer - radio 4.

12.15 today Dr Shepard was talking about M.E./CFS and lots of folk phoned in who...

•7 years ago

Oxygen therapy

Hi, I was wondering if anyone has any experience of hyperbaric oxygen therapy (breathing in oxygen whilst in a pressurised chamber, like divers) to relieve the...

Hi, I was wondering if anyone has any experience of hyperbaric oxygen therapy (b...

•8 years ago

Hell of a week!!

Hey there, just joined the site this morning. I was diagnosed last March with the following, cfs, functional neurological disorder, essential tremor oh and...

Hey there, just joined the site this morning. I was diagnosed last March with th...

•8 years ago

CFS Clinics, Gluten, Thyroid

Hello, my GP is willing to refer me to a CFS clinic in east london. Apparently its a multidisciplinary approach so I imagine it involves psychoptherapy,...

Hello, my GP is willing to refer me to a CFS clinic in east london. Apparently i...

•9 years ago

David Tuller talks about the PACE trial

Dr David Tuller discusses the flaws of the PACE trial - https://youtu.be/IGaUBE2RrSw

Dr David Tuller discusses the flaws of the PACE trial - https://youtu.be/IGaUBE2...

TheLadyOfShalott

•9 years ago

At my wits end with CFS

I have only had CFS for around 9 months but am already at my wits end. It was bought on by Glandular Fever and although the flu symptoms have diminished...

I have only had CFS for around 9 months but am already at my wits end. It was bo...

SherilynWileman

•9 years ago

what do I do?

About 5 months ago I'd been diagnosed with M.E. after a year of different blood tests and feeling like I had no energy at all, I thought I would feel better...

About 5 months ago I'd been diagnosed with M.E. after a year of different blood ...

•9 years ago

Has anyone come across petrovic protocol?

Hi, a visitor to my house had severe m.e for seven years and recovered after 3 months of treatment by Dr petrovic. She has been fully recovered for many years...

Hi, a visitor to my house had severe m.e for seven years and recovered after 3 m...

•9 years ago

Terrified

Hi to be honest I don't know where to start , I'm 25 and just been diagnosed with M.E after 6 months of constant tests , and these last 6 months have been the...

Hi to be honest I don't know where to start , I'm 25 and just been diagnosed wit...

•9 years ago

Dizzyness

Hi, I'm hoping to find out if anyone on here has an experience similar to me and if so, what if anything I could do to help myself. A bit of history about...

Hi, I'm hoping to find out if anyone on here has an experience similar to me a...

•9 years ago

M.E/CFS clinical primer

Hi this may be of use to any of you out there, it covers many of the symptoms we experience and could be helpful to give to a clinician - if they have half a...

Hi this may be of use to any of you out there, it covers many of the symptoms we...

•9 years ago

GBG Questionairre on behalf of NICE... Outcome?

Just wondering if anyone here actually took part in the 450 page questionnaire developed by GD Group on behalf of NICE, if not have they have read it and does...

Just wondering if anyone here actually took part in the 450 page questionnaire d...

•9 years ago

Desperate for help........

Hi everybody. i'm new to this ME forum. like most ppl with ME/CFS, it's a long story. i'll therefore, endeavor to make it as brief as possible. i have had ME...

Hi everybody. i'm new to this ME forum. like most ppl with ME/CFS, it's a long s...

•9 years ago

Upcoming Health Assessment

Hello! I have just had the most disappointing doctors appointment this morning and it's actually upset me so much I have felt the need to reach out to you on...

Hello! I have just had the most disappointing doctors appointment this morning ...

•9 years ago

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