Jonathan Edwards
Senior Member (Voting Rights)
Yes, I do hear that loud and clear and have no doubt it is a huge issue.
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Yes, I do hear that loud and clear and have no doubt it is a huge issue.
There are many FDA approved drugs. The ones Jen listed, in Twitter, would not help me. If a doctor doesn’t understand any of the mechanics behind his/her patient’s version of ME, along with any defined co-morbid Dx’s, then writing an Rx, off label or not, I feel is risky. If this is the scenario Jen is painting, then this needs to be clearly communicated so that the patient fully understands the risks involved before he/she proceeds with caution.
Having access to more diagnostic tests and more Rx’s is a good thing (more options). But one or more wise physicians are needed to foster the process and make the patient experience as safe as possible.
Having access to more diagnostic tests and more Rx’s is a good thing (more options). But one or more wise physicians are needed to foster the process and make the patient experience as safe as possible.
Alvin
Senior Member (Voting Rights)
From skimming the replies in this thread here are my thoughts, as mentioned drugs are used off label, which is good and bad. It allows unconventional treatments to be tried, but i would like to see any drug that shows promise be tested in a larger trial to determine efficacy. That said for some diseases (besides ME/CFS) the drugs work on some patients and not others. For example antidepressants, many patients have to try several drugs before finding one that works for them even though all are approved for that condition. That said its not easy to get every off label drug known tested, getting the trial done is difficult and new off label uses are developed all the time and dissemination is slow.
The lymphoma example to me signifies two problems, the willingness of doctors to give an easy diagnosis then wave off patients (instead of eliminating all possibilities before diagnosing ME/CFS) and the fact that CBT/GET is fraud even if they actually have ME/CFS. Its a victim blaming situation, if you have ME/CFS its your fault and if you don't improve by the fraud therapy its your fault. The doctor is the bad guy twice when they won't investigate properly before giving the diagnosis of exclusion and don't listen to the fact the treatment won't work if you have something else and even if you have ME/CFS. Its a vicious circle of harming the patient either way.
That said i am wary of taking any medication where the mode of action is unknown, when you don't know how or what something is doing then your taking unknown risks, which i don't like doing. To some it may be worth the risks, but i don't like that authorities will sometimes make benefits contingent on using dangerous and risky therapies that can cause harm, so that protecting your right to not take dangerous risks of medical harm can mean you end up homeless or locked up in an asylum with fraudulent treatments forced on you by the state
All that said i understand where Jen is coming from, i may not be willing to try some of those therapies but making them available on a patient makes the decision experimental basis is not a bad idea as long as they are approved for human use and monitored by a doctor familiar with prescribing them (not always an easy task). I just don't want anyone to think they are miracle cures, we don't know how they work, we don't know how well they work, some are risky, and we don't have a disease mechanism and the risk of serious side effects or worsening is unpredictable when your taking unknown risks.
It may also be a strategy, give up CBT/GET and try medication, if it does not work for a patient then maybe we need to do more research to invent a medication that does. Gets us away from GET/CBT.
The lymphoma example to me signifies two problems, the willingness of doctors to give an easy diagnosis then wave off patients (instead of eliminating all possibilities before diagnosing ME/CFS) and the fact that CBT/GET is fraud even if they actually have ME/CFS. Its a victim blaming situation, if you have ME/CFS its your fault and if you don't improve by the fraud therapy its your fault. The doctor is the bad guy twice when they won't investigate properly before giving the diagnosis of exclusion and don't listen to the fact the treatment won't work if you have something else and even if you have ME/CFS. Its a vicious circle of harming the patient either way.
That said i am wary of taking any medication where the mode of action is unknown, when you don't know how or what something is doing then your taking unknown risks, which i don't like doing. To some it may be worth the risks, but i don't like that authorities will sometimes make benefits contingent on using dangerous and risky therapies that can cause harm, so that protecting your right to not take dangerous risks of medical harm can mean you end up homeless or locked up in an asylum with fraudulent treatments forced on you by the state
All that said i understand where Jen is coming from, i may not be willing to try some of those therapies but making them available on a patient makes the decision experimental basis is not a bad idea as long as they are approved for human use and monitored by a doctor familiar with prescribing them (not always an easy task). I just don't want anyone to think they are miracle cures, we don't know how they work, we don't know how well they work, some are risky, and we don't have a disease mechanism and the risk of serious side effects or worsening is unpredictable when your taking unknown risks.
It may also be a strategy, give up CBT/GET and try medication, if it does not work for a patient then maybe we need to do more research to invent a medication that does. Gets us away from GET/CBT.
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G
Guest 102
Guest
Completely agree, she is totally taking the ME debate off track. She has been doing so for some time. What really throws me in spite of the abject harm of PACE, she is appealing to Michael Sharpe, who apparently has a 'major potential, positive role to play' once he's genned up on other poorly understood, terrible conditions *possibly* associated w ME. There is a whole, long thread. Still can't get to grips with this.
(Edited out a figure of speech, as it may have been misconstrued, was asked by mod, and after deliberation, have done so. )
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Melanie
Senior Member (Voting Rights)
I think she is taking on a British ME patient issue from the viewpoint of an American ME/CFS patient. We do have doctors that will still run tests and listen to us and not completely shut us down. I am on Fludrocortisone and it at least worked for the Hypotension and had full Thyroid panel tests which revealed my Hypothyroid and they also allowed me to try LDN (it didn't work but it didn't cause any harm) and so on. We aren't out of the woods here but it is a whole different battle for us in the US and I think she is trying to apply the US process, mentality, our culture and what we believe is common sense approaches and how our health system works to an entirely different process, mentality, culture, and approach to a different healthcare system and its problems.
I think British patients do have it worse than we do and no one dares to say to American patients we are troublemakers and militant patients. I can't believe Wessely and the rest got away with that. It isn't that the British patients didn't take umbrage with that moniker and speak out, but the media happily carried that message for Wessely for years and were able to get away with it.
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I feel there is no such thing as a squeaky clean perfect person. Jen’s tweets should be viewed in the context of advocating for PwME around the globe. I would assume an international news agency would understand the challenges of what Jen is trying to accomplish. But if they don’t, then that’s CNNs loss, because they would be missing out on an opportunity to promote an amazing woman, who IMO has done more to change the conversation about a global health crisis, then the rest of the previous winners combined.
Melanie
Senior Member (Voting Rights)
CNN has missed the boat on ME/CFS for many, many years. And they really aren't risk takers. Not even close. Oh sure, we have another Kennedy documentary, 6 parts. Yea, there is that new Sex doc series by Christen Amanpour, and who knows where Anthony Bourdain will eat next. All pretty lame.
Their nominees are squeaky, squeaky, squeaky clean. They don't want any boat rocking except for the antics of Anderson Cooper on New Year's Eve.
I’m going to make some specific points about the general topic, but so it’s not missed, I wanted to put the tricky bit at the top.
I think this is a useful topic, but I am uncomfortable with the way it was brought up. Sometimes when we have a newsworthy person or someone with a platform, we analyze everything they say. It must be totally exhausting to be on the receiving end of that.
Can we just talk about evidence or whatever we want to discuss without referring to what some particular person said on social media or to a reporter?
Everyone has their own strategy and does what they think is right at the time. We all learn and grow. We can have different strategies and opinions and still work together. But the working together will go easier without the “so-n-so is doing it wrong”.
Yes, constructive criticism is good, but an overabundance of criticism or criticism in a misplaced venue can be discouraging.
In the CKD patient, this may mean missing anemia or thyroid disease (people do get other things whether or not it’s related to having their other diagnosis).
In the ME patient, this too often leads to leaving the patient to muddle along by themselves with no kind of help or support or checking for other things, whether thougt to be related (dysautonomia) or whether most likely that it’s another common disease so obviously some people are going to have both (asthma).
There would be a copay ($5-$45, or 20%, depending on one’s plan and whether the doctor is considered your PCP or a “specialist” [not necessarily more training: physical therapy and massage therapy are billed at the “specialist” rate]), unless one qualifies for Extra Help which reduces or eliminates copays (for those with low incomes and assets). Not sure home visits are available in a medium city or small city to rural area.
Short-term nursing care is available at home (even in smaller cities and presumably rural centers) via Medicare. Long-term nursing care and/or home care aide (help with bathing, eating, cooking, inside housechores) through Medicaid (one must be very poor: low income and also very low assets).
Basic care like symptomatic treatment, referrals for assistive equipment and so on, is theoretically available, but you have to have a good primary care provider who believes you need it, which can be tricky. Also have to get insurance approval in many cases (certainly for a wheelchair or any expensive medication), which can be tricky.
I think this is a useful topic, but I am uncomfortable with the way it was brought up. Sometimes when we have a newsworthy person or someone with a platform, we analyze everything they say. It must be totally exhausting to be on the receiving end of that.
Can we just talk about evidence or whatever we want to discuss without referring to what some particular person said on social media or to a reporter?
Everyone has their own strategy and does what they think is right at the time. We all learn and grow. We can have different strategies and opinions and still work together. But the working together will go easier without the “so-n-so is doing it wrong”.
Yes, constructive criticism is good, but an overabundance of criticism or criticism in a misplaced venue can be discouraging.
Exactly.
The problem is that most patients experience that being diagnosed with ME, having a lot of symptoms, being quite sick but undiagnosed, or otherwise being complicated (this also happens to patients with recognized diseases like chronic kidney disease), once you’ve been categorized, they often do stop looking for other things.
In the CKD patient, this may mean missing anemia or thyroid disease (people do get other things whether or not it’s related to having their other diagnosis).
In the ME patient, this too often leads to leaving the patient to muddle along by themselves with no kind of help or support or checking for other things, whether thougt to be related (dysautonomia) or whether most likely that it’s another common disease so obviously some people are going to have both (asthma).
They are regularly in the US. I don’t think they are in some other countries. I think it would be good if we did more studies to prove whether what we are doing works as well as we think it does.
In a big city (or sometimes just outside of one) and if you are homebound and on Medicare (for Medicare, one must meet SSA criteria for disability [not easy], or be retired, and must have worked and payed FICA taxes for a couple of years, or be able to prove disability prior to age 24 and have a retired or disabled parent who worked and paid FICA taxes for a couple of years) yes, I think home physician visits are available.
There would be a copay ($5-$45, or 20%, depending on one’s plan and whether the doctor is considered your PCP or a “specialist” [not necessarily more training: physical therapy and massage therapy are billed at the “specialist” rate]), unless one qualifies for Extra Help which reduces or eliminates copays (for those with low incomes and assets). Not sure home visits are available in a medium city or small city to rural area.
Short-term nursing care is available at home (even in smaller cities and presumably rural centers) via Medicare. Long-term nursing care and/or home care aide (help with bathing, eating, cooking, inside housechores) through Medicaid (one must be very poor: low income and also very low assets).
Basic care like symptomatic treatment, referrals for assistive equipment and so on, is theoretically available, but you have to have a good primary care provider who believes you need it, which can be tricky. Also have to get insurance approval in many cases (certainly for a wheelchair or any expensive medication), which can be tricky.
G
Guest 102
Guest
Hi, Melanie, thanks for you thoughts. I guess though it didn't occur to Jen that we maybe don't want Michael Sharpe or any of the PACE gang as our allies - they have treated us so very, very badly. We have spent decades challenging the harms of bps brigade. Jennifer seems to forget this. She clearly has a lot of knowledge about overlapping 'new' conditions - and indeed they may or may not be related to ME, but her robust 'embracing' of these illnesses distracts from the very unique and complex ME saga, in my opinion. I applauded Unrest, it is a great primer in ME, but I do feel in her activism she is referring less and less to the actual illness ME.
I am a UK ME patient and 34 years ago was diagnosed by an NHS consulant neurologist with ME in Scotland, so my experience was pre-Wessely crowd. I was dxd with muscle biopsy, EMG and immune profiling, I was/am classic case of RamsayME, post-Coxsackie. I was in mid80s treated albeit experimentally with plasmapherisis and immunotherapy, took part in Imunovir trial and other trials. My illness was disappeared and rebranded by Wessey and co in 1990s. We live with Wessely's legacy today.
I am overjoyed that USA doctors like Montoya are researching ME, but it was a v diff story in 1990s, I spent time in Palo Alto, my brother was doing his doctorate, he was good friends with med students there, they had never heard of ME and the med school didn't teach it. CFS was just beginning to be talked about and I knew about Tahoe outbreak. I met one other woman with ME - or CFS as it was called in USA. So I am really just saying I have experienced both good times and bad times re ME awareness in both UK and USA.
Alvin
Senior Member (Voting Rights)
I don't agree, she is pointing out examples that have worked for some people. Now i am not interested in dangerous experimental medications but they have worked in some cases, i'd like to know how many and why they work personally but she is not a doctor who is violating an oath, she is a high profile patient advocating on our behalf giving examples of real treatments that have far more effectiveness then jumping on pieces of paper that say stop.
I would not agree with claiming those are the end all of treatment or even that we should be forced to try them, they are only examples of off label medications that have helped some people in informal testing. Perhaps she should state that more clearly.
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Guest 102
Guest
I can't get to grips with an ME advocate who would think it a good idea to tweet a PACE investigator - the long thread was copied to Sharpe and another UK doctor -it was for their benefit - re. obscure treatments/other conditions in an attempt to get him & others on side without any apparent thought to how that may seem to UK patients who have been so utterly harmed by his work, and who have spent a great deal of time and energy challenging PACE. Sharpe is not the future for pwME.
Alvin
Senior Member (Voting Rights)
I don't claim to know her motivations, perhaps its public exposure, get a PACE pusher to try and beat her down in public to make him look foolish? Perhaps its just cognitive dysfunction. In the end one cannot make a blanket statement saying attacking the alternative fact establishment is a bad idea, its all down to strategy and circumstances, so i'm not passing any judgment because i have insufficient information. That said brinkmanship can be a dangerous game, i always make sure i have lots of ammunition before taking on a powerful target. I think she has some
Jonathan Edwards
Senior Member (Voting Rights)
But I don't think anyone can say that @Alvin.
Some people feel that they have been helped by off label medications.
Some people feel that they have been helped by the Lightning Process.
(They used to post on PR and include people like Live Landmark I think)
It is exactly the same. We criticise the BPS crowd for favouring what fits their theory. To favour drug treatments is much the same.
We have no good reason to think any of these off label medicines help ANYONE with ME I am afraid. Any more than Lightning Process.
I take the point that everyone has a different way of advocating. However, we have a very practical issue here. The current objective is to get CBT and GET removed from the UK NICE guidelines because they are not evidence based and there is reason to think they may do more harm than good. Michael Sharpe is attending the meetings and if not on the committee will be lobbying to retain CBT and GET.
And if he wants ammunition he will enjoy nothing more than having access to a poorly argued case from patients. He will be able to say 'Look see this on twitter - see how irrational and non-evidence based the patient advocates are. They do not want CBT and GET but they are only too happy to advocate for medicines because that fits their beliefs about the illness.'
At the moment my guess is that there is a 70% chance that the message of needing proper evidence will not get clearly through at NICE and patients will be worse off because CBT and GET will be voted in for another ten years. The opposite of what people want. The fight is to keep on message. There is a chance that can be achieved but it needs a lot more work.
G
Guest 102
Guest
Exactly, and while everyone has different ways of advocacy and no one is infallible, I do fear JB could be doing more harm than good with these 'bullets'. This was not a throwaway tweet, it was a considered, long thread for the benefits of doctors Sharpe and Hammond. I think when you are such a high profile activist and speaking publicly on ME with authority you should really know the politics of ME in the country you are commenting on. She has clearly not understood the way in which the PACE team have undermined and distorted everything pwME have tried to do in pursuit of truth. It is inconceivable that a UK pwME would have suggested to Sharpe he had a role to play in future of ME, if he could just read the correct literature, and liase with the good USA researchers, that is simply a dream. The fact is PACE was so very harmful, in every way, and none of those doctors will ever have trust of ME community again.
Sly Saint
Senior Member (Voting Rights)
So why won't she tweet the link to the petition to get rid of CBT/GET from the NICE guidelines?
(#MEAction did ages ago, I have emailed Jen more than once, others have tagged her on PR).
Anyone else care to try?
https://www.change.org/p/nice-stop-harming-me-cfs-patients-remove-cbt-get-out-of-nice-now
Skycloud
Senior Member (Voting Rights)
I believe this to be misguided of Jen.
Taking on board what Sly posted about Jen and the petition, I hope someone responds properly to her. I don't think it would hurt for it to be pointed out that she isn't aware of all the politics in the UK generally, and the NICE guideline review in particular, and should consider that before tweeting Sharpe, or anyone else.
edit - first paragraph edited by me, at the request of a mod with which I fully agree. My apologies to @JenB
Taking on board what Sly posted about Jen and the petition, I hope someone responds properly to her. I don't think it would hurt for it to be pointed out that she isn't aware of all the politics in the UK generally, and the NICE guideline review in particular, and should consider that before tweeting Sharpe, or anyone else.
edit - first paragraph edited by me, at the request of a mod with which I fully agree. My apologies to @JenB
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Skycloud
Senior Member (Voting Rights)
@Nasim Marie Jafry and also @Trish. Agree that twitter is limited, but at least you've tried
edit - grammar
edit - grammar
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Skycloud
Senior Member (Voting Rights)
A US ME/CFS patient who has a decent healthcare policy.
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Guest 102
Guest
I do dislike with Twitter when you express something critical of someone's tweet and others agree it can sometimes seem like piling on against original tweeter, even if discussion is polite - you see it all the time and I don't like that vibe at all, so easy to be misconstrued, but is hard to get around - though JB did tweet Sharpe in a deliberately 'inclusive' manner and I think that has to be called out for its pitfalls. And I think JB is well able to handle criticism - and hopefully can learn from it, as we all can and do in other contexts..