Martin

@kirawontmiss That's illegal isn't it to pay only $3.50 per hour? DOn't thy have minimum wages in the USA like here in the UK? In any case, waiters must make a decent living if EVERYONE tips them 20% so I have no sympathy.

tipping culture is getting ridiculous

@VO2MAXCD348 Yes, I'm in remission. Just some sleeping difficulties. I don't know how. I tried lots of things like thyroid meds, B12 injections, abx and after 16 years I was in remission. HBU

@MPrulesok1 In remission? Wow.. How ? Cured ?

@cra46159 I don['t know where Brits get their money from to pay for a £2000 holiday or more in the sun every year. Just don't know how they do it. I can't even pay for just myself.

@1goodtern Hi Is covid ME the same as pre covid ME/CFS do you know?

A friend passed this to me, saying it might be helpful - it's about getting help on Long Covid from your GP, it's for a UK setting, but some of it will be applicable anywhere - read the note at the end for more too. "I work in AI. I used it to research and write my mum a letter about her Long COVID. Her GP called her the next day after 3 years of being dismissed! *Reposting here as myself since it blew up in another support group and people really want help with this… feel free to add/DM me.* So I work in AI, specifically in healthcare tech. So when my mum had been fobbed off by her GP for the third year in a row about her Long COVID, I figured I should actually do something useful with what I know. This isn't about gaming the system or bending rules. Everything I'm sharing here is publicly available on NHS and government websites. I just used AI to find it, understand it, and turn it into something a GP couldn't easily brush off. Here's what most people don't know. The NHS publishes detailed guidelines that GPs are expected to follow. NICE published a specific Long COVID guideline called NG188 that sets out exactly what a GP has to do when a patient comes to them with ongoing post-Covid symptoms. Most patients have never heard of it. Most GPs don't follow it unless someone pushes them on it. The other thing most people don't know: verbal dismissal is easy to ignore. A formal written letter that references specific guidelines creates a paper trail. The GP now has a documented duty of care they're expected to respond to. It genuinely changes everything. My mum is 61. Not remotely tech savvy. She would never have found any of this herself. I spent about 20 minutes using AI to pull the relevant guidelines, match them to her situation, and draft a letter. She sent it to her GP by email on a Tuesday. Her GP called her on Wednesday afternoon. First time in three years a GP had called her. She now has a referral to a Long Covid clinic and a written management plan, after years of being told it was probably anxiety or just her age. Posting her letter below with her details redacted. Copy it, adapt it to your situation, send it by email not in person. You need a timestamp. You need a record. That's what actually forces a response. ─── [Her letter, personal details redacted] ████████████████ ████████████████ ████████, ██████ ██ ██████ 2025 Dr ████████████ ████████████ Surgery ████████████████ ████████, ██████ Re: Formal written request for Long COVID assessment and personalised management plan Dear Dr ████████, I am writing to formally request appropriate assessment and management for post-COVID-19 syndrome (Long COVID), and to create a written record of this request for my medical file. I contracted COVID-19 in ████████ 2022 and have experienced the following ongoing symptoms for over three years: • Severe fatigue and post-exertional malaise, symptoms worsen significantly following any physical or cognitive exertion • Cognitive dysfunction, difficulty with memory, concentration, and word retrieval • Breathlessness disproportionate to exertion • Heart palpitations and episodes of tachycardia • Disrupted sleep despite significant fatigue • Generalised pain and joint discomfort These symptoms have substantially impaired my ability to work, maintain daily activities, and quality of life. CLINICAL BASIS FOR THIS REQUEST NICE guideline NG188, COVID-19 rapid guideline: managing the long-term effects of COVID-19, was developed jointly by NICE, SIGN and the Royal College of General Practitioners. It applies to any patient with new or ongoing symptoms four or more weeks after acute COVID-19. Under NG188 section 5.2.1, GPs are expected to use a multidisciplinary approach to guide rehabilitation, including physical, psychological and psychiatric aspects of management. Under NG188 section 5.2.2, GPs must work with the patient to develop a personalised rehabilitation and management plan, which must be recorded in writing. NICE states explicitly that healthcare professionals are expected to take this guideline fully into account. This is not optional guidance. Under GMC Good Medical Practice (2024), where a GP cannot adequately manage a patient's condition, they are required to refer to a specialist with the relevant expertise. Under the NHS Constitution, I have the right to be referred to an appropriate specialist where my GP is unable to provide the required clinical management. I have not received a personalised management plan or specialist referral in three years of presenting with these symptoms. WHAT I AM FORMALLY REQUESTING 1. A holistic clinical assessment consistent with NICE NG188, including physical, psychological and functional domains 2. A personalised rehabilitation and management plan recorded in writing, as required under NICE NG188 section 5.2.2 3. Referral to the Long COVID clinic or appropriate multidisciplinary rehabilitation service 4. A written response to this letter within 14 days I would like this letter to be added to my medical record. I am not requesting anything outside published NHS guidelines. I am asking for what those guidelines state I am entitled to receive. Yours sincerely, ████████████████ Date of birth: ██/██/████ NHS number: ███ ███ ████ Based on: NICE NG188 (January 2024) | GMC Good Medical Practice (2024) | NHS Constitution (2023) *Verify current guidelines at nice.org.uk before sending.* ─── Same approach works for basically any condition where you're being dismissed. MCAS (I am currently writing myself a letter to escalate my own issues with this), fibromyalgia, EDS, POTS, chronic fatigue. The escalation pathways exist for all of them, most people just don't know how to use them. If it’s useful I could build a tool that does this automatically for you. You answer a few questions about your condition, it finds the relevant guidelines and drafts the letter for you. If that sounds useful, DM me or comment. Happy to write one manually for anyone in the meantime. Not medical advice! Keep seeing your GP. Call 111 if anything gets worse."

@KarenLHargrave Is covid ME the same as pre-covid era ME do you know?

Full article here 👇 (NB end of the story needs an update!) inews.co.uk/inews-lifestyl…

I spoke to @theipaper recently about the battle I’ve faced the past two years covering the spiralling costs of James’ care. Since the interview our local authority has offered a new care package that will take the pressure off - but still doesn’t reflect James’ 24/7 needs.

@ruthefordml That is because healthcare has "c0vered up" ME/CFS for so long that ill patients are fed up.

Healthcare is probably the only profession where people think it's okay to argue what the professionals on what they know. Nobody argues quantum physics with physicists, or law with lawyers. But everyone is an expert in healthcare.

@BayouMystere @MastcellMadness @MECFSisCFSnotME They think ME is a kind of poliomyelitis even though there's scant evidence for an encephalitis or myelitis in the literature.

@BayouMystere @MastcellMadness Yes she believes that ME is a distinct disease caused only by enteroviruses. It is a theory proposed by Dr Hyde but the ME Association don't advocate this theory. @MECFSisCFSnotME believes in this theory too.

Ok, so apparently there is an "ME" patient org that claims ME/CFS doesn't exist. If you have allies like this, you don't need enemies anymore. 😅

@elitecompltd All the winners are mates of the company owners I bet

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@jewstein3000 @ME_Vereniging or you may have low NK cells. Meirleir said in ME you can have low or high NK cells. Those with low get reactivated viruses and mycoplasmas, and those with high NK cells don't catch anything.

@jewstein3000 @ME_Vereniging I was replying to @ME_Vereniging. My EBV was not reactivated when I first had PVFS (ME). I did a EBV test which was normal. Perhaps you have an abnormal RNaseL then if yur ebv is reactivated.

You’re dying of long covid and you think the enemy is a woman dying of the same illness as you but she also refers to another diagnosis she got from her doctor (MECFS). Meanwhile, she’s on more antivirals and anti-inflammatory meds than you bc her doc has done this for decades.

@ME_Vereniging @jewstein3000 I don't think antivirals help ME either. I had some tests done for chronic infection (eg C-reactive protein), and they were normal but I still had PVFS.

@jewstein3000 Antivirals do not help with 'ME/CFS'. It is not ME.

@erikmoldwarrior @GenevieveIguess You could read this book here amazon.co.uk/Enteroviral-Me…

@GenevieveIguess Dr Ritchie Shoemaker did a fabulous job of explaining this in his 2001 book Desperation Medicine. "Toxin Dissociation" from a bound receptor causes a cascade of immune reactions. It's sequential activation of innate immune factors that causes the runaway "crash"

I have moderate ME/CFS. I also have POTS and hEDS. Feel free to repost this for awareness so that others may get themselves tested for these things. My test findings are: * High levels of mycotoxins * Gut dysbiosis - very high levels of Citrobacter freundii, Staph, Strep and Clostridium with low levels of good bacteria. Also SIBO * Low aconitic acid (Krebs cycle metabolite aka mitochondrial marker) * High HVA/VMA ratio * High IgE * Low vitamin C and vitamin B2 * Vein compressions - Internal jugular vein compression by C1, left brachiocephalic vein compression, left renal vein compression, and duodenum compression * Neurotransmitter imbalances - high histamine, tyramine, PEA. Low noradrenaline, normetanephrines, tyrosine, noradrenaline/adrenaline ratio, taurine, glycine, and N-methyl histamine. * Hormonal imbalances - low DHEA, testosterone, and free androgens. High prolactin. Cortisol seems to fluctuate between low and normal. * Military neck/cervical kyphosis * Massive drop in cerebral blood flow when I’m standing aka low cerebral perfusion * Low end-tidal CO2

@marinaflares what are the symptoms of LCME compared to pre covid ME?

For many people with myalgic encephalomyelitis and POTS, summer is hell. But, despite severe POTS, I improve so much as soon as the temperatures hit 25C. I can almost feel peripheral circulation improving and my body relaxing because I am actually warm. The relief!

@pjl788 I just checked my messages and there aren't any. I can't send a message to you for some reason eitther. WHat did you want to say?

@pjl788 @subversivepsych just this platform I am afraid. you can discuss here if u wish.

Throughout my battle with long Covid, Covid vaccine injury and then ME I had reactivation of various herpesviruses. EBV, VZV, HSV-1. Probably HHV-6 but it’s hard to get testing. It’s nearly so obvious it gets misssed. Thank you to Prof Iwasaki for doing this important work.

@pjl788 @subversivepsych chat isn't working my side at the moment. It keeps asking me for a passcode and then says error.

@MPrulesok1 @subversivepsych Or you can try messaging me and see what happens

@pjl788 @subversivepsych where do i find messages? I clicked on Chat but couldn't see any message.

@MPrulesok1 @subversivepsych I messaged you, we can discuss more about this

@pjl788 @subversivepsych Dr Hyams used to give Ampligen to private patients in Oxford, UK but he left and went to practise in Canada.

@pjl788 @subversivepsych I see. Well my RnaseL test was negative/normal. I wonder h ow they are getting on with Ampligen treatment for pwME in Argentina? It's allowed there for severe ME treatment but I have not heard a dickie bird about it.