Last week, my body gave me the finger. I can’t even say I didn’t deserve it. After more than 19 years, I still don’t always listen to my body and this makes her very, very angry with me.
I’ve previously talked about how rotten 2013 was for me personal life-wise. And about how advocacy work around the IOM contract has been overwhelming. But I am a stubborn woman, especially when it comes to learning from my mistakes. Already depleted, I threw myself into the research and analysis of the IOM Panel in December. I spent the month of January preparing my presentation to the IOM (written and video available). And there was that little thing called “the holidays” smack dab in the middle of it.
I thought I had everything under control. I pared January down to the essentials – only what absolutely positively HAD to be done in order to prevent physical, financial or emotional harm to me and my family. And coming to the end of the month, I thought I nailed it. My presentation was ready and basically memorized. I submitted my written version with references on time. And the absolutely-positively-must-be-done-in-January list was mostly accomplished. I was determined to attend the meeting and give my presentation in person.
Then I got sick(er). Not just a crash. I mean SICK. There’s some difference of opinion in the house about whether it was a bad cold on top of a crash (husband’s theory) or influenza partially mitigated by my flu shot (my theory), but it doesn’t really matter. I was bedridden with a fever, etc etc for five days, and the IOM meeting was on day three.
So despite all my preparation and organization and determination, I could not give the presentation in person. My husband later said that he thought the trip to DC would have ended in an ambulance ride. He says I haven’t been this sick since my two day CPET in April 2012.
I gave my IOM presentation from bed, feverish and not really sure if I was saying it right. It seems like I got my point across. And I’ve certainly dealt with the disappointment of missing out on something I really wanted to do before. Endlessly. For more than 19 years. The reality of this disease kept many people from attending the meeting (or even watching it). The reality of this disease exacted a high price from the patients who were able to attend.
But this felt a bit different to me. I felt like I was being punished by my body. That she reached the breaking point with the I’ll-just-push-a-little-harder routine, the endless repetition of I’ll-just-keep-going-until-the-end-of-the-month /project/year/controversy/crisis. And of course, my body had reached the breaking point and I was the one responsible.
Every single patient-advocate I know does this. I started a list, and realized I couldn’t even name you all here because every one of us does this. Sometimes, a patient has to drop out of advocacy for awhile (or forever) to try and recover. Most of us keep going until we just can’t. As soon as we can get back up, we are at it again. ME/CFS voices must be heard, and that means that those who are able and willing must speak. And pay the price for as long as we can.
I know there’s a balance point, a magical formula for parsing out work and rest. It’s just that I don’t like where that balance point is. There is too much advocacy work to be done, and nowhere near enough of us to do it. So many of you are putting yourselves at risk to make things better for all ME/CFS patients. I have to help.
My body gave me the finger. I deserved it. It remains to be seen if I actually learn from it this time around.
Sorry to hear this. Similar things happen to me as you suggest. Best of luck for the future.
Jennie, very sorry to hear the details–or a few of them anyway. I suspect that the IOM and P2P will continue in their mixed up and mostly regrettable ways in spite of anything even you can do, so take that more than earned rest and just keep hoping that those good people on the committees (or most of them) will be able to pull something good out of this mess, or if they are unable to do that, will quit with maximal noise and impact.
Best wishes for a steady recovery (to …?) Chris
It sure SUCKS, doesn’t it. UNbelievable that we are put in this position in the first place–soooo verrry sick–and look at the hoops and hurdles put up AGAINST (us) CONTINUALLY–to get to the REAL answers and get our lives back–it is just nothing short of criminal. Ohhh, yess, the real story needs to come out. Take good care–we know that is easier said than done . . . and that even in ‘taking care’ that does NOT ever equal wellness or a substantive full life–that’s what we’re fighting for.
Jennie-
I’m so sorry you did all the prep work and got punished for it by your body. You expressed it very accurately. As a former activist I’ve sort of dropped back in my mid-60s to let my body lead for a while. It makes a tremendous difference healthwise but I miss contributing at a more active pace. Do take care of yourself. After seeing some of the names of people recruited for the IOM effort I felt somewhat reassured. And if they heard from people such as yourself they had to be better educated about this illness by the end of the meeting. Take care.
I know there’s a balance point, a magical formula for parsing out work and rest. It’s just that I don’t like where that balance point is.
I couldn’t have said it better myself. In the same position this last month, though only in small part due to IOM and somewhat more due to spending an entire night (1-2am until 10am-ish) reading through the alphabet soup of programs at the Office of Disease Prevention and AHRQ (stupid, I know, but it’s like I couldn’t help myself and in my defense, I was lying down). But mostly it was dr. appts./holidays/my man finally being able to visit me (we’re kept 8 time zones apart by poverty, nationalism, and SSI –which I would lose if we married) and my preparing wildly for his visit. At least now he’s here to take care of me during the crash.
But none of us deserves this. You don’t. I don’t. Yes, we do have some agency in mitigating how horribly this Damn Disease f***s with us. But does a battered wife ever deserve to be beaten? Even when she says the nastiest things? Of course, there are no shelters for us. No way to leave the “relationship” we’re in. So we muddle on as best we can. At least I’ve got a soft bed, a nice view, hot clean water from the tap, etc., which is more than a lot of people on this planet have right now.
I like the battered woman analogy. I have to think about that some more.
I guess what I was trying to say with “deserve” was that I knowingly took a risk, and I lost. I have really pushed the limits of my endurance for a year, and I knew deep down that January might just be too far. I didn’t expect that to manifest as the virus from hell, but I did know I was risking a very serious and hard crash. I tried to mitigate that risk as much as possible, and looking back, I don’t know what I more I could have eliminated. I couldn’t refuse to help out a family member who needed me, and I couldn’t reschedule a long-awaited specialist appointment. I guess I could have turned down the IOM invitation. I could have lowered my self-expectations for the final product, especially the written memo. But I chose not to because there’s no do-over here. This might have been my only chance to address the panel and know that they were listening.
It just occurred to me that if I had known the virus from hell would strike, would force me to speak from bed, and knock me out for two weeks . . . I would have done it anyway. I gambled on the payback, but I still think I made the right call.
Well, in all fairness, you gave CFS the finger when you accomplished SO much in a relatively short period of time. 🙂 I don’t know how you did it. Sheer will, I suppose. You defied the laws of CFS, for sure.
I suspect that after this new viral burden flies away, you’ll be back at it again, climbing up that mountainside, ‘cuz you’re that awesome!
You deserve a vacation (or two, or three!) Take care of yourself now and know that the work you’ve accomplished is phenomenal.
Please look after yourself Jenny. Your advocacy work is amazing but you are more important! I, personally, would be happier if you did less and had better health.
My husband would be happier too!
Sorry to hear about your body and the illness catching up with all of your efforts. You describe the experience so well. It’s descriptions like these – i.e. the crash/collapse that comes after what for healthy people would be a normal hard day or two of work (which we need to break up into days and week) – that, when I first got sick, I immediately recognized and that eventually led to my diagnosis.
Thank you for all that you do in advocacy – it’s inspiring and very much appreciated. Hope you feel better soon.
None of you “deserve it.”
Billie
For those of you who are healthy and reading this blog, I ask you to really listen to what Jennie and the other patients are saying.
This is the experience of every single ME patient that I have ever met. Their body punishes them with a crash for the mere act of advocating for themselves and their disease. These crashes are the result of the hallmark symptom of post-exertional malaise (PEM), associated with a dysfunction in how the body produces energy. For some patients, even just bathing or making a meal is enough to bring on PEM.
This is the awful reality that these patients face every single day. This is also the reality that has made it so easy to ignore these patients and trivialize their disease for thirty years – they can not sustain the fight.
ME patients need our help – the help of healthy family, friends, journalists, researchers, clinicians, and legislators.
Demand answers to why HHS is ignoring ME experts who have called for the adoption of the Canadian Consensus Criteria and instead are conducting three separate initiatives to create its own criteria.
Demand answers to why CDC continues to promote an overly broad case definition that focuses on fatigue and treats this distinctive PEM as an optional symptom. Ask why CDC’s medical education doesnt include PEM as a mandatory symptom and why it recommends exercise as a treatment even though exercise can harm patients because of their PEM.
Demand answers to why NIH funding is lower than almost every other disease – even hay fever. Ask why world class researchers struggle to get their research proposals approved.
Demand answers to why, after thirty years, there are still no biomarkers or approved treatments and doctors still think ME patients are just crazy or lazy.
Get involved. Demand answers. These patients need those who are healthy to stand up and shout out for them!
For more information, see:
http://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome
http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/
http://www.youtube.com/user/MECFSAlert
Thank you so much for speaking UP and OUT for us, Mary!! Indeed–WHY–WHY–WHY and MORE WHY??? EXCELLENT questions that DEMAND attention and REVERSAL of this NONsense and ATROCITY!!!
All the UNtoward actions that you describe above are so HARMFUL to ME patients’
health 🙁 🙁 AND WHY don’t ‘they care’ — WHY are our lives deemed DISpensible and DISposable . . . ??!! All 17 million of us world-wide and counting!!! In favour of ‘fixing’ male pattern baldness . . . grrrroan. Who is steering this ship that has run completely amuck . . . ??
“I know there’s a balance point, a magical formula for parsing out work and rest. It’s just that I don’t like where that balance point is. ”
Well said. I hope you’re feeling better!
in many ways, i feel i never got better from the push i put out for the FDA meeting. i think there comes a time when the body punishment you speak of happens with less and less activity. and the crash lasts longer and longer. it used to be that i could push to get something done. it used to be that when i pushed to get something done, i’d crash for x amount of time. well, now the crash comes sooner/faster/earlier and lasts longer and is worse.
separately: my family supports me. my family loves me. yet still they can’t do what mary is calling for them to do. their own lives get in the way. they want to live their lives, not fight for my life.
oops, i got cut off. here is the end of that thought of mine from my above comment…
my family cares about me, but they have seen me sick for 24 yrs. at first — when i first got sick decades ago — they thought it would just pass in a few weeks, then they thought it would pass in a year. then it became 2 yrs. i, too, thought it would pass. but 2 yrs became 7 yrs, which became 10, which became 15 and then 24. over time they got accustomed to hearing me complain daily about my body and my brain. and now it is just normal for them to see me with a limited life. they don’t feel it is something to rise up in arms about. yet each day, each f*cking day, i am flat out horrified at how sick i am and how much of my life i have lost, and at how today, this very day, i am going to lose yet another day. that single lost day, well, it feels like a tragedy beyond belief. and yet for them, for my family, it is the same old, same old. nothing to get outraged about. i love my family, i am so glad for their help, but dropping their lives to get into me/cfs advocacy is not going to happen.
>Every single patient-advocate I know does this. I started a list, and realized I couldn’t even name you all here because every one of us does this. Sometimes, a patient has to drop out of advocacy for awhile (or forever) to try and recover. Most of us keep going until we just can’t. As soon as we can get back up, we are at it again. ME/CFS voices must be heard, and that means that those who are able and willing must speak. And pay the price for as long as we can.
No. This is not true. Those people (including patient advocates) who do mold avoidance do not crash like this from stress. Admittedly, avoiding mold may be much less preferable for many people than avoiding stress. But it is an option.
I suspect that what Rivka describes is true for many of us.
Yes, yes, yes. I understand all too well and have been there myself so many times! Count me among those who have withdrawn somewhat from advocacy efforts lately (as I’m sure you’ve noticed) because I just can’t manage it right now. I had a rough fall and my son is still doing poorly, so it’s been a struggle lately.
I am so very sorry that you weren’t able to go to the meeting after all your hard work. I know how disappointing that is. I, too, seem to be a slow learner!
I hope you recover quickly and are feeling better soon!
Love,
Sue
What I have learned is this: There is NO magical formula for parsing out work and rest! We can try. We can do our best. And we need to keep trying and we need to keep doing our best. But always, always, we are at the mercy of unknown factors that crawl out of the woodwork at night and bite us. Or, for reasons that are random and inexplicable, we are blessed with energy fairies who sprinkle well-being dust all over us. The truth is, we don’t ever really know. Flu happens. Colds happen even to the very healthy! The weather changes. We encounter toxins from anything and everything. Sometimes we outspend our energy allotment, but oftentimes we stay within our limits and we still pay for it!
The other thing that has been true for me: I am visited less often by the energy fairies the longer I remain sick. And the longer I remain sick, the less visible I become. The less visible I become, the less seriously my illness is taken.
I have no answers.
Well said, meg.
@Rivka
Yes thank you Meg. Very well said and true for so many.
I’ve been sitting here for the past couple of hours, trying to decide whether I should let this go or whether I should say something else.
I think I need to say something else.
Whether anyone decides to try mold avoidance at whatever level (moderate or extreme) is up to them. I am not trying to encourage anyone to pursue it.
However, I do think that those people who define themselves as advocates should be making an effort to understand the phenomenon that mold avoiders have experienced, rather than ignoring it or dismissing it without asking any serious questions.
There are a lot of people in this community who have benefited from this phenomenon. They haven’t just been helped a little bit. They have been helped a LOT. To the point where this whole push-crash phenomenon disappears.
As I say, the extent to which people must scrupulously avoid mold in order to make this happen can be extreme and thus not appear worth doing for many people. Some people do not have the financial or practical resources to pursue this approach. And some people doubt whether this approach would work for them.
Those positions are all perfectly legitimate, in terms of people’s personal decisions. Everyone should do what they think best with regard to choosing treatments for their own illness, including this approach.
But I do have an objection to comments like the one above, about how all “patient-advocates” suffer from the push-crash syndrome. Because that suggests that those of us (and it’s not just me) who are simultaneously doing mold avoidance and advocacy, and who do not crash as a result, either a) are not really advocates, b) do not have the same disease, or c) are lying.
None of those things are true, and it makes me upset to have anyone suggest it.
Those of us who have pursued this path have discussed the phenomenon over and over again in this community, in a great variety of ways. Maybe we haven’t done a good enough job of telling our stories, that some people still don’t get that this is a real phenomenon. But it’s certainly not for lack of trying.
Below is a comment related to this topic from “ME/CFS Warrior,” on how this phenomenon and those who have taken advantage of it have been systematically marginalized.
I think that people reading this blog need to start thinking about the harm that they are doing — both to those people who are mold avoiders and to those people who might choose to pursue mold avoidance if it weren’t so frequently dismissed or derided by community leaders — when they act like this phenomenon is not worthy of being taken seriously and that those of us who have taken this path are not a legitimate part of this community.
*
>I know there is a lot of controversy about mold avoidance but the reality is that people have dramatic improvements when they follow the guidelines.
>I know that the people who have embarked on this journey have had to go “in the closet” so to speak because of the judgment that has come their way. They become as marginalized by the CFS community as CFS patients do by healthy people.
http://cfswarrior.blogspot.com/2013/08/odds-and-ends.html
I’m very glad you posted this, Lisa. It’s an important reminder that we do not deal in absolutes. My statement was intentionally qualified to people I know. I’ve gotten to know many more people in the last few years, and there is always more to learn. As I get to know you, Lisa, I am learning. I’m grateful for that.
Lisa, please don’t tar everyone with the brush of being dismissive of mold avoiders. I have been following this disease for 22 years and never heard of mold avoidance as a distinct method of improving one’s health. That mold might be a trigger of ME or cause an exacerbation of symptoms goes almost without saying, and I assume that is well understood. My own position on scrupulously avoiding mold to help you get better is — WHATEVER WORKS! It is wonderful that this has worked for you and some others! I am amazed anyone would denigrate it. Have you written much about this, so your methods can be shared? It must be hard to do as mold is so ubiquitous. With this disease patients often have to be their own researchers.
Billie
The story of how mold started Chronic Fatigue Syndrome is told in Dr Ritchie Shoemakers book, “Mold Warriors”
Chapt. 23. “Mold at Ground Zero for CFS”
Gateway Press 2005
Thanks very much, Jennie and Billie. I really appreciate those sentiments. 🙂
Just yesterday, I got a note from someone I hadn’t corresponded with for about a year and a half. She talked about the fact that a year ago, she was desperately ill with M.E. (in a wheelchair, tube fed, system shutting down). Now she says that she is working 30 hours a week, able to drive, and “mostly recovered.” She credits avoidance, various kinds of detox, and a couple of drugs that she wasn’t able to tolerate before starting avoidance.
Her question to me was: how can I talk about this with people in the ME/CFS community, or should I even try? Because when she does try to talk about it, people tell her that she must never have had the disease to begin with. And for people who have been down this road to hell and manage to come back, that is really frustrating.
I’d like to see her feel comfortable talking about her story publicly, rather than just telling me and a few other “believers.” Maybe we could learn something about the disease from her — and from others like her — that would benefit everyone, regardless of whether they end up pursuing avoidance at all.
Sorry to hear you are so unwell, Jennie. Yes, I think this is common. We work so hard, much harder than we really have the health for, and although we do try to be careful, it will catch up with us sometimes.
@Jennie #6 I would have done it anyway. I gambled on the payback, but I still think I made the right call.
😉 I so hear that (and from the quality of your presentation suspect you are correct). Sometimes I find myself just saying “f**k it; I know what’s gonna happen but c’est la vie…” The question I do wish we had a good answer for is, do we do permanent damage with each subsequent crash? Is it like debt where once you hit a certain level it’s almost impossible (short of winning the lottery) to pay it off?
@Carrie #7 – LOL – she did indeed give it the finger! All of us who try to grab whatever quality of life we can give it the finger. 😉
@Lisa #23 – At the risk of hijacking the thread, I’m a bit confused by your comment here and in the one above (#17). There are any number of treatments that have eliminated PEM for some ME/CFS patients, but the fact remains that PEM is the hallmark phenomenon of the disease we currently call ME/CFS. Should you, for instance, not practice mold avoidance, you too would have PEM if you were to engage in activities — advocacy or otherwise — beyond your “energy envelope.” Moreover, I feel when I read your comments here and elsewhere that you are implying that mold is THE cause of ME/CFS. I feel like Jennie’s comment bothered you because it implied that if all patients with ME/CFS practiced mold avoidance, nobody would have PEM or the push-crash problem and she and those of us who continue to have PEM do so because we do not practice mold avoidance. While I’m thrilled for you and those for whom mold avoidance has helped and also very happy that you and others share this information that, in turn, helps others, I’m confused about why you feel that by not mentioning mold avoidance your status as an ME/CFS patient (and your advocacy) is being negated? It also makes me feel like we are all obligated to invoke mold avoidance even if it (or antibiotics, or gluten-free diet, or B-12, or CBT/GET, or…) has not eliminated our push-crash cycles.
In 2011, 10 fingers held up, I went on. SOK, CFSAC, CFSAC, OTTAWA…I don’t even remember; WHICH IS the point. I was so sick, but on the wheel, I gave ineffective testimony. That last time, I think in 2012, I was talking, but I did not understand what I was saying.
Someone had to smack me in the head to get me to settle down. Well, it was grandchildren and the realization that I can reach a level of functioning to think my way out of the bag to take care of the kids, but only if I let other things go. I can no longer say, I will rest tomorrow and do this work today. I can no longer make 4 calls a day to talk to patients. I do not regret one minute of it.
LIE. I do regret being in the NIH building, not hearing the call for the bus, not having the cell and not looking to make sure I had money for cab. I did not know where I was…2 friends who were helping pick up got me back to the meeting room, I was unable to talk. I really let myself fall far that time and it scared me, the amazon lady, oh yeah. Hats off to anyone who stands up, but be sure to sit down when you need to. Laugh a bit. Dye your hair blue. ANd send an unexpected delight to a patient who has nothing, is expecting nothing and is worth gold. SO THANKS TO ALL OF YOU….I am preaching, but, hey and so it goes.
Mary Dimmock, the first three paragraphs of your comment, on what we experience, and on the reality that made it so easy to trivilalize it, “they can not sustain the fight”, moved me like you have no idea… It’s so dead-on…
Because of the ‘Subject Matter’……I can ‘Only’ write at least these words. A BIG ” Yes ” to what has been said…’been there & done that’ ! sick- 30 yrs+………
I live in my little world now…zen-like 🙂 ……AND.. I ‘Honor’ ALL, who ‘Serve’ this Community and I am truly grateful !… ” WE F—ing ROCK “!
& Thanks for the ones whose’s “Eyes Are Open” to the Real Story behind this….
” Pat Fero…Love the ‘Blue Hair’ & the ‘unexpected delight’ idea’s ..:) Blessing’s to All… of Us ‘Hero’s’ xxxx
& PEM SUCKS !!! 🙁
@Mary Dimmock
Thank you Mary!
That’s exactly what we need, our families to help us, including with activism. For most patients it’s a herculean battle just to get our families to treat us like human beings with a serious disease and to help us stay off the street and secure some modicum of health care. Getting others with ME, and more importantly, our families to help with advocacy is absolutely vital. We all need to work on somehow getting them to help us.
Mary, that’s why I so much appreciate your call for ‘civilians’ to help us. There is no way we can do it ourselves without literally killing ourselves or consigning ourselves to a living death of extreme illness. Please keep it up.
@Pat Fero
Pat, thank you for all you have done for us!
I admire the fact that you even attempt advocacy. Right now, where I am with this disease, I find it all I can handle to navigate the day-to-day of my life. I would like to be more involved with those of you who are on the front lines of this fight, but I don’t have the mental or physical ability to do so.
I am trying to build a life for myself and my family within the constraints of ME/CFS. I am blogging about my journey and hope others can benefit from what I am learning along the way.
I am actively looking for blogs from others who are struggling with this disease so I can better understand how others cope. Thank you for doing what you do for the cause.
So did everybody hear that ME has been named The Official Disease of the United States Olympic Downhill Team?
Apparently the mandatory red white and blue hair on fire is still being considered by the rules committee.
After moving to Capitol Hill to lobby for all of us for a couple years at the beginning of the first Gulf War I can say it has had absolutely no effect on me. hahahahasob.
Keep your spirits up, folks. 🙂
Lisa,
I think (some) people the world over are looking for that WHATEVER WORKS treatment or treatments. Please let your friend know that there are many who would welcome whatever she has to offer. She should know, however, that many will ignore her advice; say the treatments are worthless/inadequate/only for a few/(fill in the blanks). And if that’s the case, that then she should ignore THEM (don’t take it personally). My son was always looking for something that worked for someone else and was usually willing to try it. I know others who feel the same way. I also know many who have a set regime of treatment and won’t consider anything else.
I would urge your friend to share her treatments and experiences, even dosages that worked. It is always a person’s individual choice as to whether to follow such advice. This patient community needs all the help it can get, and since it is getting so little help for all quarters, we can still help ourselves.
I will start with a simple thing – the first thing that ever helped my son was evening primrose oil, which got him on his feet again early on in his ME (then called CFS). And I know of a research group that has had some success with using the CPAP machines for people with GWI and ME/CFS, and I know of one man whom that helped tremendously. Long story on why this could work.
Billie
I meant to say “from all quarters.”
@Justin Reilly
Just a little word of cheer and a beacon of light–last week my Internist doc hosted a Family and Friends’ Night for p/w ME/CFS. The hospital auditorium was pretty much filled. My doc had told me that even if I couldn’t come–they–my family–could. He said that the meeting was about giving information and also compassion–as he stated that many p/w ME/CFS do not have support. Wellll, that was my outing goal for the month of January–being in recovery from Christmas.
The Family and Friends’ Night was the best gift to have ever been given in this HORRID ‘politicalized and HIDDEN’ disease of ME/CFS.
Soooo, Internist’s doc resounding statements throughout the presentation–ME/CFS is REAL–it IS DISabling–it is NOT psychological. He told of a patient whose husband told her–either you get well or I am leaving the marriage. He told of a 20-year old patient whose parents would NOT come to this Family and Friends Night because they did not believe she was ill (OLD, OUTdated, INaccurate MISinformation floating around out there). When someone in the crowd asked–“Will hypnosis help?” Doc’ response—NO–because ME/CFS is NOT psychological.
My Internist doc also teaches medicine at the university. He asked the med students what they know about ME/CFS. They said they didn’t know much–“What do you know?”
The med students said–“ME/CFS isn’t real and p/w are nuts.” My hero doc then asked the med students where they got that information from—answer–from other doctors.
Sooooo, my Internist doc is out there setting the record straight @ Med School–and in the province in Canada where I live–he is part of an Expert team that are putting together a pamphlet about ME/CFS that will go to all physicians in the province to teach and educate the docs some facts of the very REAL ME/CFS. Goooo, HERO doc, gooo!! AND, we DO have some hero docs 🙂 (in this POLITICAL MESS!!)
From a personal perspective–this gift that my Internist doc gave to me–and my family–and to all the other patients there–this Family and Friends Night–was, indeed, a beacon of light. Factual medical information REplaced and DISspelled MYTHs and UNtruths ‘out there’ about ME/CFS on a level that I (we) could never have achieved on my/our own. I felt that, not only was it supportive to me as a patient, but also to each individual in my family–as well as collectively together as a family. They now have ‘power’ too–power in the truth about ME/CFS–the very REAL BIOLOGICAL disease.
@Ess, a video of something like that might be very useful — perhaps also a short one for internet usage.
@Roy
Right you are, Roy–not videod . . . Will keep my eyes and ears open on that front!!!!
@Michelle
I share a similar view to Michelle about Lisa’s approach to mold avoidance. I think it is great you have found mold avoidance helps you significantly and that others through your help have also been greatly helped. My only concern is although you are careful to couch your words in saying you can’t say 100% for sure mold is a problem for everyone with this illness it always comes across that this is what you really think and that if we if all do mold avoidance we would all be a lot better. Is it not more likely that it is a significant subset but not all.
It might seem silly but I think I would be more open to what you have to say if I felt you weren’t so convinced all ME/CFS is really a mold problem
@Ess
What a fantastic internist. Thanks for this encouraging comment
This journey has a lot of villains, but there are lots of heroes too. Thank you, Ess, for sharing (post 39)! Jennie, hope you’re continuing to recharge and charge (and “Charge!”).