Read on Twitter
[Thread]
“Re: Management of post-acute #covid19 in primary care - A warning to #PostCovid sufferers and their clinicians” by @ozfish (who has #MEcfs for 30 years)
https://www.bmj.com/content/370/bmj.m3026/rr-7
#LongCovid #LongHaulers #Scepticism #CFS #MyalgicE #CovidLongHaulers #CovidLongHauler
1/n
“Re: Management of post-acute #covid19 in primary care - A warning to #PostCovid sufferers and their clinicians” by @ozfish (who has #MEcfs for 30 years)
https://www.bmj.com/content/370/bmj.m3026/rr-7
#LongCovid #LongHaulers #Scepticism #CFS #MyalgicE #CovidLongHaulers #CovidLongHauler
1/n
2/n
“Pseudoscience wears many guises. People with poorly understood long term medical conditions have always been the target and victims of snake oil sellers promoting their untested and sometimes dangerous treatments, some coming at us from unexpected directions.”
#Sceptic #MUS
“Pseudoscience wears many guises. People with poorly understood long term medical conditions have always been the target and victims of snake oil sellers promoting their untested and sometimes dangerous treatments, some coming at us from unexpected directions.”
#Sceptic #MUS
3/m
“In my thirty years living with ME/ #CFS, I have experienced disbelief, misunderstanding and unhelpful advice from all directions - advice to exercise from doctors that made me sicker, and alternative medicine whose only effect was to empty my wallet.”
#MEcfs #MyalgicE #PwME
“In my thirty years living with ME/ #CFS, I have experienced disbelief, misunderstanding and unhelpful advice from all directions - advice to exercise from doctors that made me sicker, and alternative medicine whose only effect was to empty my wallet.”
#MEcfs #MyalgicE #PwME
4/n
"Like Post #Covid, ME/ #CFS is not just about fatigue. The defining symptom is post exertional malaise or 'crash' which some #PostCovid pts report experiencing too. The only strategy pts find helps is pacing-surprisingly difficult for people desperate to return to normal life"
"Like Post #Covid, ME/ #CFS is not just about fatigue. The defining symptom is post exertional malaise or 'crash' which some #PostCovid pts report experiencing too. The only strategy pts find helps is pacing-surprisingly difficult for people desperate to return to normal life"
5/n
"People with ME/ #CFS are battered on all sides by a persuasive mix of treatments promoted on the basis of professional eminence, charisma, or compelling anecdotes, but devoid of good research evidence of efficacy or safety."
#MEcfs #MyalgicE #PwME #MyE #CFSME #CFIDS #SEID
"People with ME/ #CFS are battered on all sides by a persuasive mix of treatments promoted on the basis of professional eminence, charisma, or compelling anecdotes, but devoid of good research evidence of efficacy or safety."
#MEcfs #MyalgicE #PwME #MyE #CFSME #CFIDS #SEID
6/n
“First, there is the NHS itself. CBT & Graded Exercise Therapy (GET) have been the subject of numerous badly run & inaccurately reported clinical trials which showed, at best, transient improvement on inadequate questionnaires easily influenced by therapists. (Contd.)”
#MEcfs
“First, there is the NHS itself. CBT & Graded Exercise Therapy (GET) have been the subject of numerous badly run & inaccurately reported clinical trials which showed, at best, transient improvement on inadequate questionnaires easily influenced by therapists. (Contd.)”
#MEcfs
7/n
“(Contd.) They [CBT & GET for ME/ #CFS trials] showed no long term benefit, and no improvement on objective measures such as fitness or return to work [5]. Many patients report long term harm [6]. Yet the NHS still provides CBT/GET.”
#MyalgicE #ChronicFatigueSyndrome #MEcfs
“(Contd.) They [CBT & GET for ME/ #CFS trials] showed no long term benefit, and no improvement on objective measures such as fitness or return to work [5]. Many patients report long term harm [6]. Yet the NHS still provides CBT/GET.”
#MyalgicE #ChronicFatigueSyndrome #MEcfs
8/n
“Second, there are the multitudes of 'alternative' therapies with enticing sounding names, or named for their founders. None with any sound evidence of efficacy and safety [7]. All potentially eager to sell their wares to unsuspecting post #Covid patients”
#Spoonie #Spoonies
“Second, there are the multitudes of 'alternative' therapies with enticing sounding names, or named for their founders. None with any sound evidence of efficacy and safety [7]. All potentially eager to sell their wares to unsuspecting post #Covid patients”
#Spoonie #Spoonies
9/n
“I have learned to protect myself from pseudoscience by joining an ME forum ( @s4me_info) whose focus is rigorous examination of research & wider sources of information about ME/ #CFS, and whose members include scientists and doctors (Contd.)”
#MEcfs #MyalgicEncephalomyelitis
“I have learned to protect myself from pseudoscience by joining an ME forum ( @s4me_info) whose focus is rigorous examination of research & wider sources of information about ME/ #CFS, and whose members include scientists and doctors (Contd.)”
#MEcfs #MyalgicEncephalomyelitis
10/n
“(Contd.) Examining all the evidence without fear or favour is hard work for sick people, that’s why we need to band together to do what would be overwhelming if tackled alone.”
#EvidenceBasedMedicine #EBM #chronicillness #ChronicFatigueSyndrome #Spoonie #MyalgicE #MEcfs
“(Contd.) Examining all the evidence without fear or favour is hard work for sick people, that’s why we need to band together to do what would be overwhelming if tackled alone.”
#EvidenceBasedMedicine #EBM #chronicillness #ChronicFatigueSyndrome #Spoonie #MyalgicE #MEcfs
11/n
“I wish all #postCovid patients a speedy and safe recovery. I sincerely hope none will be saying in thirty years time as I and many ME/ #CFS sufferers are now, that we have been ill served by the medical community (contd.)”
#MEcfs #MyalgicEncephalomyelitis #PwME #MyalgicE
“I wish all #postCovid patients a speedy and safe recovery. I sincerely hope none will be saying in thirty years time as I and many ME/ #CFS sufferers are now, that we have been ill served by the medical community (contd.)”
#MEcfs #MyalgicEncephalomyelitis #PwME #MyalgicE
12/12
“(Contd.) Patients with #postCovid, ME/ #CFS, and all other ill understood medical illnesses deserve better than being pushed into the hands of irresponsible purveyors of misinformation and #quacks.”
#ChronicFatigueSyndrome #LongCovid #MEcfs #millionsmissing #MyalgicE #MyE
“(Contd.) Patients with #postCovid, ME/ #CFS, and all other ill understood medical illnesses deserve better than being pushed into the hands of irresponsible purveyors of misinformation and #quacks.”
#ChronicFatigueSyndrome #LongCovid #MEcfs #millionsmissing #MyalgicE #MyE
