Discussion in 'General ME/CFS News' started by Countrygirl, Oct 23, 2017.
This runs for about 4 minutes.
I'm glad Jen has at least some bits of time when she feels "normal."
Unfortunately, there are scores of patients who never feel 'normal' for even an hour of the day, as they battle, flu feeling, nausea, GI distress, pots, etc etc. Their symptoms never leave them, they just cycle.
That's whey I don't like the battery analogy. It plays into the 'it's all about fatigue' misconception about the disease. When one states that as long as their battery is charged - even if their battery capacity is lower than others) they feel normal, it seems like it is solely an energy issue.
This is not the case with the majority of ME patients. We feel sick all the time whether our battery has charge left or not. We have sore throats, headaches, muscle pain, cognitive problems, sensitivities to light and noise all the time.
With PEM, there is an excarcerbation of the symptoms but they are there all the time.
I am placing this here rather than starting a new thread as it is not confirmed, but if you listen to Jen's statement at 15.53 for a few seconds, she says she is grateful to HIV research as she has clearly benefited from it. This suggest to me she is also taking anti-retrovirals, most likely viread. What do you think?
She just says drugs approved for AIDS.
I agree with you @Nielk .
I think the take-home message of this film as far as people who do not have ME are concerned is that it is purely about energy-failure.
That is a real pity but it is the film's main message and the one people will remember.
The two AIDS drugs being used by quite a few with ME over the past six or so years are viread/tenovir and isentress. I suspect these are the ones she is referring to as I have heard of no other AIDS drugs in use. (well, I think fingers is using one I hadn't heard of before.)
I have heard her mention Valtrex. Valtrex was used for AIDS as well.
She has claimed that two days after taking Valtrex, she was able to walk - which sounds miraculous to me and that if she were to stop Valtrex, she would be bed bound within days.
Maybe you are right @Nielk .
I understand it is a drug used for herpes infections.
Was HHV6A ever finally ruled out as a triggering co-infection for ME? I recall much was made of this alleged connection some years ago?
It is precisely because there are symptoms there ALL the time that some people have been driven to take their own life. These people could no longer withstand the extreme suffering...
Someone here must know Jen, and as she so clearly wants to do her utmost for this illness, perhaps this person/s would please speak to her about this.
I also do not like the battery analogy.
No, neither do I. It plays into it is ' just extreme fatigue narrative.'
Go Jen !
She is such a
She gets it across so well in pretty much every interview she does.
Re the battery analogy. I have heard her say that as long as she sticks within her limits she feels "relatively normal ". I suspect she is being brave and what she means is that she can function and do some stuff. But like a lot of us she has become inured to some symptoms.
A good day is so much better than a crash that you don't notice the pain the weird feelings and all the ways in which your body still isn't working well. She certainly didn't look well in that clip and at times you can tell she is struggling.
It would be good if she stressed that some symptoms are ever present. And the sicker the person is the more that is true. I sympathise with her though trying to get all this across in repeated interviews.
I think the battery analogy is good. It is something that a person who has no clue about ME can begin to get their head round.
Maybe it is because I have mild/medium symptoms and vary a lot from being able to go out to being in bed with PEM.
I thought the film through bringing in other people's stories did a pretty good job of showing what much more severe ME is like to those of us who haven't experienced it personally.
Antivirals and Mestinon I think I've seen her say on Twitter
Some of you guys are too hard on her. Imagine being that sick and then the stress of travel, a T.V. appearance and discussing a complex issue. It will be impossible to satisfy every PR member's issues.
I don't think the take home is that ME/CFS is only about energy issue, but that it's a disease that has extreme fatigue. People retain very little of what they hear, Jen is giving good take away points - and she's giving a good take away impression, that it's a serious disease. That's what people will remember and care about, not a list of possible symptoms.
She actually made the point that it's not about fatigue. She also referred to herself rather than all pwme. Jen has done a remarkable job of bringing this issue into mainstream media and has repeatedly reinforced that it is about PEM rather than fatigue, a message that is key to understanding why cbt/get are inappropriate.
Jen is a spokesperson and driving force but there is clearly a team behind her that know what they are doing. We might choose to say different things given the same opportunity but no one can deny the impact Jen and Unrest are having.
I think we have a tendency to want our advocates to present the perfect interview and make the perfect statement, the perfect film, whatever, because we are so silenced. We're silenced by our illness, by the neglect and misinformation of the medical profession, by the benefits system, by family and friends, by ourselves even. Fill in the gaps with whatever I've missed out.
Jen's doing a good job, whatever nits I might pick.
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