John L Whiting @John_CFS
Physician, expertise in Myalgic Encephalomyelitis Brisbane Australia Joined June 2010-
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If you read the ABC of MUS treatment GET by this NICE committee member, they state: 'symptoms remind us to do less - but one way out is to do more'! Ask patient to gradually increase activity. I ask is this all theory, bad theory, or has this doctor rever met many ME patients?
If you read the ABC of MUS treatment GET by this NICE committee member, they state: 'symptoms remind us to do less - but one way out is to do more'! Ask patient to gradually increase activity. I ask is this all theory, bad theory, or has this doctor rever met many ME patients?
My review of @NICEComms guideline comments from doctors reveals a list of problematic comments, many highly misleading. Perhaps a paper is required on this. I trust what I have presented reveals why many ME patients have found getting good care so difficult.
It’s a hard thing to get people outside of the community to understand, and I know it helps no one now and it will be decades too late for many? but I hope one day people look back on this and recognise it for the scandal that it is and how it breached patients’ human rights. 3/3
And they seemed confused that this was a thing that we would have cause to celebrate in 2021, or that it’s taken this long and this much campaigning just for that to happen. And it struck me how little people know of the sheer depth of harm done to M.E patients. 2/3
One of my non-disabled pals said to me today “great news about the NICE guidelines - does this mean there’s treatment available now?” And I had to explain that actually no, it just means that the harmful “treatment” has been removed. 1/2
My comments on new NICE #MEcfs guidelines. The harm from graded activity-oriented therapies in the past is a tragedy & it's very disappointing the system was so slow to pick up on it. From @DoctorsWithME statement doctorswith.me/nice-2021-a-tr… #CFS #PwME #ChronicFatigueSyndrome 1/
...we found out in our survey with people living with severe ME that many found hospital vistis and stays very difficult and even traumatising! some patients have since refused to go back to hospital for checks or scans. Drs and nurses need some awareness of how ME impacts people
exactly my point, ME patients are not asking that more critically ill or other patients are not prioritised, ME patients simply require their illness understood and considered within avl hospital resources eg quiet area bed. Instead, drs and nurses dont truly understand ME needs!
@MichelleBull4 It’s baffling to me that physiotherapists and Drs still took until 2021 to finally listen to their patients with MECFS, Fibro, long Covid, etc.
The @PhysiosForME website shares some of the information about abnormal physiological responses to exercise in people with ME physiosforme.com/physiological-… to find out more. Plus the newly published NICE guidance for ME/CFS is also clear - no graded exercise therapy for this group
As a physio I'm passionate abt promoting physical activity because of the health benefits it can bring. So pleased to see that the statement specifically says that the findings of the research should NOT be applied to people with ME/CFS or Long Covid. #ConsensusStatementonOnRisk
As a physio I'm passionate abt promoting physical activity because of the health benefits it can bring. So pleased to see that the statement specifically says that the findings of the research should NOT be applied to people with ME/CFS or Long Covid. #ConsensusStatementonOnRisk
On a protest-heavy day, indigenous islanders whose homes are sinking underwater marched on #Cop26 in Glasgow. Groups from Panama, Amazonia, Patagonia, Alaska and the wider USA were joined by activists belfasttelegraph.co.uk/news/uk/indige…
750,000 Americans have died from COVID and it’s not the top story. What has happened to us?
So Johnson flies from Climate conference in Scotland by private jet to have dinner at the Garrick Club with friend and climate denier Charles Moore Hypocrisy or just taking the piss?
Name me another condition that can be so debilitating and with so few treatment options, also e.g. in the UK money for treatment all spent on GET/CBT. #mecfs
Records released by @NICEComms show the Royal College of Physicians @RCPhysicians asked NICE to remove an expert witness testimony on the grounds they werent an expert in "guideline dev or pragmatic trials". The expert in immunology has a long-term interest in ME/CFS science!
The @RCPhysicians argued that guideline committee members and witnesses who had any affiliation with ME patient organisations were "activists" and should be dismissed. These included doctors and professors with years of expertise and knowledge on ME/CFS.
@MatthewJDalby @keithgeraghty @RCPhysicians I wonder why these obnoxious clinicians think it is OK that they continue to talk utter, utter, utter crap? I doubt would be excusable with any other illness. They are odiously unethical in my opinion.
@MatthewJDalby @keithgeraghty @RCPhysicians ‘...there is under-representation from patients who have recovered from ME/CFS’ should surely read instead ‘who have recovered from idiopathic chronic fatigue’. These clinicians are barbaric in their refusal to accept reality of lives of pwME. They are also TEDIOUS as hell.
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13K Followers 1K Following I'm the Science & Environment Editor on the Today Programme on BBC Radio 4. All my own views not the BBC's.Keith R Laws @Keith_Laws
5K Followers 229 Following Prof Cognitive Neuropsychology | Former non-musician (2 definite articles) | Editor Brit Jnl Clin Psych, Comprehensive Psychiatry. Views my ownAllison Haynes @AllisonDHaynes
775 Followers 397 Following Severe #MyalgicEncephalomyelitis since 1989. Advocate for distinct disease #MyalgicE per #MEICC, Ramsay/Hyde. See https://t.co/spkz9AttU7, https://t.co/2hHbNgW3ct #pwME. She/her.If you read the ABC of MUS treatment GET by this NICE committee member, they state: 'symptoms remind us to do less - but one way out is to do more'! Ask patient to gradually increase activity. I ask is this all theory, bad theory, or has this doctor rever met many ME patients?
@keithgeraghty @NICEComms No objections to Chris Burton who provided MUS GP training for Medically Unexplained Symptoms & wrote Book, Murphy involved in PACE and Beadsworth, (BACME) supportive of CBT/GET & hosted Per Fink?
@lornamcfindy I had a friend message me after the LBC coverage to say she’d heard about this treatment called GET and someone saying how great it was for them, she’d try and remember the name of the doctor they saw etc. Totally well-meaning but it crushed me.
It’s a hard thing to get people outside of the community to understand, and I know it helps no one now and it will be decades too late for many? but I hope one day people look back on this and recognise it for the scandal that it is and how it breached patients’ human rights. 3/3
And they seemed confused that this was a thing that we would have cause to celebrate in 2021, or that it’s taken this long and this much campaigning just for that to happen. And it struck me how little people know of the sheer depth of harm done to M.E patients. 2/3
One of my non-disabled pals said to me today “great news about the NICE guidelines - does this mean there’s treatment available now?” And I had to explain that actually no, it just means that the harmful “treatment” has been removed. 1/2
@TomKindlon @DoctorsWithME Thank you for being a most extraordinary and dedicated human, Tom.💙
My comments on new NICE #MEcfs guidelines. The harm from graded activity-oriented therapies in the past is a tragedy & it's very disappointing the system was so slow to pick up on it. From @DoctorsWithME statement doctorswith.me/nice-2021-a-tr… #CFS #PwME #ChronicFatigueSyndrome 1/
...we found out in our survey with people living with severe ME that many found hospital vistis and stays very difficult and even traumatising! some patients have since refused to go back to hospital for checks or scans. Drs and nurses need some awareness of how ME impacts people
exactly my point, ME patients are not asking that more critically ill or other patients are not prioritised, ME patients simply require their illness understood and considered within avl hospital resources eg quiet area bed. Instead, drs and nurses dont truly understand ME needs!
@missdaisyfdoo 😡😡😡please share this briefing paper with them. world.physio/news/world-phy…
@MichelleBull4 It’s baffling to me that physiotherapists and Drs still took until 2021 to finally listen to their patients with MECFS, Fibro, long Covid, etc.
The @PhysiosForME website shares some of the information about abnormal physiological responses to exercise in people with ME physiosforme.com/physiological-… to find out more. Plus the newly published NICE guidance for ME/CFS is also clear - no graded exercise therapy for this group
As a physio I'm passionate abt promoting physical activity because of the health benefits it can bring. So pleased to see that the statement specifically says that the findings of the research should NOT be applied to people with ME/CFS or Long Covid. #ConsensusStatementonOnRisk
Benefits of physical activity for people living with long term conditions 'far outweigh the risks' shows new consensus statement: movingmedicine.ac.uk/riskconsensus #MovingMedicine #PhysicalActivity #ConsensusStatementonOnRisk
On a protest-heavy day, indigenous islanders whose homes are sinking underwater marched on #Cop26 in Glasgow. Groups from Panama, Amazonia, Patagonia, Alaska and the wider USA were joined by activists belfasttelegraph.co.uk/news/uk/indige…
750,000 Americans have died from COVID and it’s not the top story. What has happened to us?
So Johnson flies from Climate conference in Scotland by private jet to have dinner at the Garrick Club with friend and climate denier Charles Moore Hypocrisy or just taking the piss?
Name me another condition that can be so debilitating and with so few treatment options, also e.g. in the UK money for treatment all spent on GET/CBT. #mecfs
Records released by @NICEComms show the Royal College of Physicians @RCPhysicians asked NICE to remove an expert witness testimony on the grounds they werent an expert in "guideline dev or pragmatic trials". The expert in immunology has a long-term interest in ME/CFS science!
The @RCPhysicians argued that guideline committee members and witnesses who had any affiliation with ME patient organisations were "activists" and should be dismissed. These included doctors and professors with years of expertise and knowledge on ME/CFS.