Indigophoton
Senior Member (Voting Rights)
Or he is keeping an eye on the Virology blog, and/or he picked up on DT's article from someone else's tweet.
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Michael Sharpe skewered by @JohntheJack on Twitter
- Thread starter Indigophoton
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Arnie Pye
Senior Member (Voting Rights)
If person A has been blocked by person B on Twitter, then person A has two choices that I know of - use another browser to view person B's Tweets without logging in. Or log out of Twitter on their usual browser. The log out option sounds like it would be a bit of a nuisance, to me, so I'd go with the different browser option.
Having said all that, I don't have a Twitter account at all which must be a similar scenario to having logged out, and I can read public tweets.
Luther Blissett
Senior Member (Voting Rights)
Or use private/incognito mode in the browser.
You can view tweets even if you've blocked.
Simone
Senior Member (Voting Rights)
This is so true. I’m mostly bedbound. My mum, who is my carer, also has mild ME/CFS. She sees me in PEM, hears me talk about it, but still keeps saying over and over that she thinks she’s “coming down with something”. For years I’ve been trying to explain to her that that’s PEM, and it’s what I feel when I’m crashed. But she still says she’s tired or thinks she’s got a virus.
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Simone
Senior Member (Voting Rights)
I agree and it’s why I use “ME/CFS”, both as an umbrella term to capture whichever diagnosis people have received (ME is rarely used as a diagnosis in Australia. Most will receive a diagnosis of CFS), but also as a placeholder, to signify that we don’t yet know whether this is one illness, one illness with subgroups, several illnesses or a combination. For me, “ME/CFS” is about waiting to let the science tell us, and it’s also about not leaving anyone behind. We need to be advocating for all.
Simone
Senior Member (Voting Rights)
Mithriel
Senior Member (Voting Rights)
"But I view the us versus them mentality as inhumane. It's clear to me that there is a group bent on creating a second class of patients: making one group into the 'undeserving ill' so as to elevate ourselves. I'm not okay with the narrative that there are 'real' patients who have 'ME' and 'false' patients who have 'CFS'. I'm not okay with CFS being a nonentity. There are people who do meet Fukuda without meeting CCC (that just-under-half) and they're still sick. I still want to help them. I still feel that they're part of our tribe."
There may be a group which thinks there are "real" patients and others but many of us who have been trying to get ME recognised for years do not think like that and our points should be considered.
ME came in epidemics and any answer about the cause should take that into account. CFS was meant to be about the disease found in an infectious outbreak so it is not just an old historical disease not found anymore. Many infections are subclinical so the bigs can be in their causing damage without you knowing. I suspect a lot of cases of gradual onset happen this way. A sudden onset but a very gradual worsening. I attended school without missing a day for the first 4 years of my illness as fatigue was not one of my symptoms let alone 50% drop.
The real point is that CFS did not even describe the outbreak that the CDC had been called in to look at. Strauss decided it was chronic epstein barr and when he discovered that many of the patients did not have that he just used the same definition but tweaked and strained it. CFS symptoms were not taken from a close examination of patients in the way every other disease has been and as ME was. You can't have an outbreak where the main symptom is 6 months of chronic fatigue!!!
So it is the "disease" CFS that is not real, not the patients that are not sick. Being told you have CFS when you actually have ME is medical abuse and we should fight it, fight it, fight it.
Also, and importantly, many of the diseases that get called CFS but are not ME are much worse than ME. Many people with glandular fever are very ill and completely bedridden for months but then recover without developing ME.
I would like to think that we would campaign for other poorly understood diseases if a treatment were found for ME. We have the expertise and the organisation, but we do no one any favours if we do not distinguish between what people have. No treatment for ME will cure Behcets disease or vice versa.
I really hope we soon get the research that will give us the vocabulary to discuss and the ability to test for what we suffer from so we do not have to try to make sense of symptoms we can't describe exactly. But to say it does not matter doesn't make sense to me. If epidemic ME is one aspect of a more general disease or if overtraining syndrome turns out to be another way of having damaged mitochondria then the sooner we know the better.
There may be a group which thinks there are "real" patients and others but many of us who have been trying to get ME recognised for years do not think like that and our points should be considered.
ME came in epidemics and any answer about the cause should take that into account. CFS was meant to be about the disease found in an infectious outbreak so it is not just an old historical disease not found anymore. Many infections are subclinical so the bigs can be in their causing damage without you knowing. I suspect a lot of cases of gradual onset happen this way. A sudden onset but a very gradual worsening. I attended school without missing a day for the first 4 years of my illness as fatigue was not one of my symptoms let alone 50% drop.
The real point is that CFS did not even describe the outbreak that the CDC had been called in to look at. Strauss decided it was chronic epstein barr and when he discovered that many of the patients did not have that he just used the same definition but tweaked and strained it. CFS symptoms were not taken from a close examination of patients in the way every other disease has been and as ME was. You can't have an outbreak where the main symptom is 6 months of chronic fatigue!!!
So it is the "disease" CFS that is not real, not the patients that are not sick. Being told you have CFS when you actually have ME is medical abuse and we should fight it, fight it, fight it.
Also, and importantly, many of the diseases that get called CFS but are not ME are much worse than ME. Many people with glandular fever are very ill and completely bedridden for months but then recover without developing ME.
I would like to think that we would campaign for other poorly understood diseases if a treatment were found for ME. We have the expertise and the organisation, but we do no one any favours if we do not distinguish between what people have. No treatment for ME will cure Behcets disease or vice versa.
I really hope we soon get the research that will give us the vocabulary to discuss and the ability to test for what we suffer from so we do not have to try to make sense of symptoms we can't describe exactly. But to say it does not matter doesn't make sense to me. If epidemic ME is one aspect of a more general disease or if overtraining syndrome turns out to be another way of having damaged mitochondria then the sooner we know the better.
Jonathan Edwards
Senior Member (Voting Rights)
'On 25 years doing trials with leading trialists '
I guess Sharpe is claiming this is his CV. He does not seem to realise that to anyone who really knows about trials the term 'leading trialsist' reads as 'wheeler dealer charlatan' - a bit like the boss of mine who got a a reputation for being a 'leading trialist' in rheumatology in the 1970s and finally got booted out as a phoney. The more Sharpe tweets the more he tells us how little he understands about science.
I guess Sharpe is claiming this is his CV. He does not seem to realise that to anyone who really knows about trials the term 'leading trialsist' reads as 'wheeler dealer charlatan' - a bit like the boss of mine who got a a reputation for being a 'leading trialist' in rheumatology in the 1970s and finally got booted out as a phoney. The more Sharpe tweets the more he tells us how little he understands about science.
I certainly don't see it as 'us and them'.
I care about people who have their lives blighted by any 'fatiguing' illness. I have a family member whose life has been blighted for several years by brain fog and fatigue, but she can exercise without ill effect. I want a treatment for her just as much as for me and my daughter, but studying us together as if we had the same thing may not help either of us.
I want both properly researched, but mixing both groups in the same study is likely to confuse the picture rather than elucidate, I think.
And Gulf War Syndrome, as another example, though it has many of the same symptoms as ME, seems to have different biology, so needs to be researched separately.
Once something is found, for one subgroup, then it can be tested to see if it applies to the other groups as well.
I care about people who have their lives blighted by any 'fatiguing' illness. I have a family member whose life has been blighted for several years by brain fog and fatigue, but she can exercise without ill effect. I want a treatment for her just as much as for me and my daughter, but studying us together as if we had the same thing may not help either of us.
I want both properly researched, but mixing both groups in the same study is likely to confuse the picture rather than elucidate, I think.
And Gulf War Syndrome, as another example, though it has many of the same symptoms as ME, seems to have different biology, so needs to be researched separately.
Once something is found, for one subgroup, then it can be tested to see if it applies to the other groups as well.
Daisymay
Senior Member (Voting Rights)
And I've always hoped that if one group can be shown irrefutably to be organic, not behavioural, and the psych research totally exposed then all other groups will be looked on with a more open mind and not just tossed into the MUS dung heap.
Indigophoton
Senior Member (Voting Rights)
It did not happen with MS, gastric ulcers, Lupus, rheumatoid arthritis, heart disease, etc. These theories run parallel to regular medicine, so even when conventional medicine rejects these claims the psychobabblers just continue with a new group, or any from the old groups that they can get away with. So far they have been generally unaccountable to science, evidence, reason, ethical care, and so on. So many primary care doctors will think twice, but many psychiatrists will not.
Daisymay
Senior Member (Voting Rights)
Yes I know and you may well be right but ME, CFS, GWS, IBS, POTS, FMS etc they are all much more similar in the eyes of doctors, and with the whole MUS momentum at present I still hope that if one is exposed then others will follow,that seeds of doubt will be sown and that at least more doctors will accept the possibility that if they were wrong on ME they may well be wrong on these other diseases, I live in hope!
I don't want to be pessimistic, but it will take a long time... Take IBS. We already know that a big subset of IBS is an autoimmune disease caused by infectious gastroenteritis. There's even an FDA approved drug Rifaximin in US, which doesn't address the underlying issue, but treats some of the consequences (SIBO) and is more effective that any behavioral or antidepressant intervention. Does it prevent UK authorities from lumping IBS together with their psychosomatic nonsense? Not really.
My guess is that we will only be vindicated when there is a treatment that physicians can administer and see the change with their own eyes. That's when the real change will happen.
It's quite sad that because of whatever reasons(training, too many patients, etc), most GPs that we see, can't really look at the patient with an open mind and therefore approach the problems more like an auto mechanics rather than university trained professionals.
The problem is that "Malaise" is just that, only worse. Malaise in popular culture history is synonymous with lazy, hysterical or psychiatric. Exercise intolerance, which is close to exertion intolerance, is a known medical issue with many diseases. Psychiatrists might well think of malaise as a psych condition, on the basis that a vague symptom is not real (and yes I know that is fallacious).
See https://www.merriam-webster.com/dictionary/malaise , in which malaise is a vague or hard to identify unease. There is nothing vague about PEM at an experiential level, though it is definitely vague in terms of current diagnostics unless CPET is involved. As the blood test research improves I expect this to change.
Exercise intolerance - https://medical-dictionary.thefreedictionary.com/Exercise+intolerance - exercise intolerance limitation of ability to perform work or exercise at normally accepted levels, as measured in exercise testing.
Exercise testing as in CPET.
I am more interested in research criteria, rather than clinical criteria, and SEID is not one of those definitions that should be used in research. If using SEID in research I think it should be heavily operationalized, and more resemble ICC after that.
I do however think, for all its flaws, the IOM report is extremely useful to advocacy. I just don't forget about the flaws. If we had another evidence based review in just a couple of years I think there would be a lot of good new data that would inform the panel. Some of the research that is pending publication changes how we think of ME.
i actually think exertion intolerance is a good description as it isnt just exercise intolerance it is doing anything that requires too much energy intolerance so I think it has to be exertion
however I can see why some folk arent too keen particularly when I looked at the definition - adjacent to exercise intolerance is activity intolerance
which is at high risk of being hijacked to fit deconditioning
activity intolerance a nursing diagnosis accepted by the North American Nursing Diagnosis Association, defined as a state in which a person has insufficient physiological or psychological energy to endure or complete necessary or desired daily activities. Causes include generalized weakness, sedentary lifestyle, imbalance between oxygen supply and demand, and bed rest or immobility.
Agreed. However when a doctor hears it they are going to think exercise intolerance till you explain the difference.
Activity intolerance is one I have not seen much about.