Kerry Newnham

@CaroleBruce17 @DrAmirKhanGP If you add up ME & CFS, fibromyalgia, MCAS, POTS & now LC, that’s a lot of female patients that GPs have mainly been left to manage, who’ve essentially just had a sigh & “I have nothing to offer “response. No challenge to systemic failure in mounting a fitting response.

I long for the day when first class Drs don’t have to say, “I feel really helpless when I see them” meaning #LongCovid or, later #ME patients. We need Drs to demand more research and treatment options. More like @DrAmirKhanGP who come out and talk about us publicly. 🙏

@CaroleBruce17 @DrAmirKhanGP Besides the few drs who’ve gone into these fields to provide care, there’s not been speaking out on our behalf from medics whether they have a public profile or not. ITO #ME NICE guidelines, RCGP complained that they = “TOO medical”, even when it just fobbed off patients with GET

Folk who follow #TeamClots may be interested to know that Dr Selina Shaw has a new (non-NHS) #LongCovid clinic Tues/Weds/Fri online or in Stokenchurch, Bucks. 222healthcare.co.uk/partners/long-…

The blood–brain barrier can be damaged and leaky decades after an athlete retires from contact sport. This leakiness seems to trigger a lasting immune response that is closely tied to cognitive decline go.nature.com/40ANaNB

@ABrokenBattery @DrAmirKhanGP @ZackPolanski Besides the few drs who’ve gone into these fields to provide care, there has not been speaking out on our behalf from medics whether they have a public profile or not. ITO #ME NICE guidelines, the RCGP complained that they =“TOO medical”, even when fobbing off patients with GET

People with #LongCovid, #MECFS and similar conditions don’t get the recognition and funding they deserve — @DrAmirKhanGP Unless decision makers have been personally affected, it’s almost as if they think ‘it won’t happen to me’ — @ZackPolanski

@ABrokenBattery @DrAmirKhanGP @ZackPolanski But post-viral syndromes should be of interest to the public, they literally could happen to anyone at any age, & take away agency & fucntion. The illnesses named amount to maybe 5m in numbers, that’s HUGE - 3/4 of which will be women - not rare or fringe but medically shunned

@_Lucibee FWICS It continues the downward pressure on severity definition - arguably aiding severe ME sidelining &marginalisation of 2007-2025 FDP. The 25% prevalence =based on house OR bedbound, yet framing - case study/descriptors (& heavy use of “may be”) = people in bed & helpless

UPDATE!!! (A version of) the Severe ME module has now been given general access, and is available here: learninghub.nhs.uk/Resource/79376… #MEDeliveryPlan

George Adam tells MSPs his wife Stacey, who has MS, "was ever facing unbearable suffering at the end of life, she would want a choice.”

@useless_priest The Ministry of Research considered 12-17 million per year enough. They gave in and conceded 50 million per year for 10 years only because of political pressure. 🤬

The fact that Germany can devote $50m/year for a decade exposes how much of a joke it is that in the US we are asking for $50m for a “Research Roadmap” for a condition with high potential for pathology and treatment subgroups like ME/CFS

I see this as actually a hopeful sign. We all expect that no one in govt cares enough about this human rights catastrophe to address it. What’s hopeful here is that activists exerted enough pressure to change the outcome regardless - surely we can replicate this elsewhere!!

@RightToLifeUK Completely different situation for people facing imminent unpleasant deaths or in ghastly levels of disability with no agency, control, escape, release, pleasure etc This is not a disability rights issue, it is separate. Liz Carr, an active actor is not who this is about

Liz Carr asks "If you saw someone about to jump from a bridge, would you just stand by?". The answer is no, but, sadly, not many think so when it comes to assisted suicide. 🤔

Scottish Labour MSPs were massively against the Assisted Ding Bill: 17 to 3 against That's an 85 - 15 % split Contrast Westminster PLP which is 60/40 pro

@65Johnston @ddhitchens Then that is where disability advocates, if they really think it will expand that far, which I don’t, should focus their efforts, not consigning the masses who want to avoid a miserable death to suffering

@ddhitchens I get what she means but that’s a whole different debate.

Remarkable speech from Pam Duncan-Glancy (Independent): “There will be countless disabled people in our constituencies who haven’t had the choice to have a shower in weeks. People who can’t choose when they go to bed. Some who will already be in bed. “People who can’t choose what to eat. People who can’t choose to go out of their house, because it isn’t accessible. People tonight who can’t choose the care or the healthcare they need, including at the end, because it simply isn’t available for them. “And crucially, there will be disabled people whose struggle is so hard that they’ve given up hope, given up fighting, and will be considering tonight taking their own lives. “I know this, because I have been all of these people I’ve described. They live in fear every single day, worrying about what new limit someone else will put on their lives, and what little power they will have to change it. They live every single day without choice at all… “In a world where so many have little or no choice, we can’t risk making death the only choice they ever have.”

@NewtimberSteph @BronwynChat @ddhitchens They are not, they are being given the choice in circumstances where palliative care an only do so much…

@BronwynChat @ddhitchens You have missed the point - people should not be forced to chose death because they have do not have any other choice.

@ddhitchens This is true but I don’t think assisted dying for terminally ill or catestropic levels of disability eg locked in syndrome, the type of chronic conditions who might also seek AD, should be conflated with general disability struggles & governmental, medical & societal failings

@Dr_TheHistories Bravo, they are beautiful

The Bank of England has announced that future £5, £10, £20, and £50 banknotes will feature wildlife instead of public figures. The announcement came after a public consultation where people were asked what themes they would like to see on future notes. According to the bank, about 60% of respondents supported the idea of highlighting nature and wildlife, making it the most popular option. Other suggested themes included cultural landmarks, scientific achievements, and famous historical events. The next generation of banknotes could show animals, plants, or ecosystems found in the U.K., replacing the long-standing tradition of featuring notable individuals such as Winston Churchill or Jane Austen on the reverse side of the notes. © Reddit #drthehistories

@bmj_latest @mancunianmedic The BMJ has not cared that in ME/CFS, young people, 75% can’t work, 25% are house or bedbound and activity is massively reduced by incapacitation

Rising global temperatures will lead to millions more people becoming physically inactive and cause an estimated half a million premature deaths a year, new modelling suggests bmj.com/content/392/bm…