Discussion in 'General ME/CFS News' started by Tom Kindlon, Dec 27, 2017.
Wish we had more studies. My background follows this sort of progression. I got ill eight years ago at 32 and had 2 bad years with marked improvement after the 3rd year. I was told I had a thyroid condition and allergies. I did two years of immunotherapy and begin feeling much improved, although fatigue lingered. Over the next few years I resumed "life" and activities, but modified.
I picked up horseback riding in lieu of bodybuilding, acrobatics, and trapeze. Hiking also went by the wayside. I returned to grad school as a legal career was no longer feasible. I could only handle half-days at school. Still, I would have described myself as a healthy individual, even though I depended on a 1/2 tab of Sudafed and coffee to start my days. I just thought I had a lingering allergy issue (which is what the doctors told me) and felt better with the medication...even though I would arrive home in the late afternoon and have to nap everyday.
By summer of 2016, after returning to work, my house of cards collapsed. I was finally diagnosed with ME/CFS, and spent five months in bed. I'm currently moderate and can no longer work or read much. I'm 95% house-bound, and get excited when I can do the laundry and cook dinner. I shower about every three days and can socialize outside the house about 2 days per week. Our norms change, we adjust and small gains seem huge because we appreciate the little we can do. If I'm not feeling flu-like, to me that is a "good day"...even if I'm unable to leave the house.
I've read this article many times. In particular, the prognosis for long term teen onset patients (like myself).
One more thing I would add is that in the past I've rated my health as "good" because I've been told I was healthy by my doctor.
As blood tests etc were all normal, I was told that any problems I was having were psychological. My inability to concentrate, lack of stamina, short term memory issues, brain fog, difficulty walking were all dismissed as psychological.
So I would say that some of the discrepancy Dr. Bell describes is not just due to being used to symptoms, but also likely due to patients parroting a good health rating based on what their own doctor has told them.
For me, I see the downside of ME more of a temporary setback, while I forge a pathway back toward my baseline. There is nothing “normal” or “new normal” or “used to” about ME. It plainly sucks and I refuse to accept it as permanent condition.
I have no idea what Dr. Bell is talking about, but how folks decide to live with ME is strictly their business (certainly not mine or his).
I don’t like hype, doomsday theories, bleach drinkers, or snake oil salesmen. Everyone else is okay in my book.
I agree Webdog according to medicine my health is good even though I am disabled.
Mermaid I do not accept this either. I will do anything that seems plausible to get better. If you told me treatment that would get me better would shorten my life I would not care.
You have an excellent point. Dr. Bell's assumption that the progression of adolescent onset ME/CFS is similar to adult onset may not be valid. (here I'm assuming you were adult onset... please correct me if I'm mistaken)
As an adolescent onset, I do recognize what Dr. Bell is talking about. When you've never experienced wellness as an adult and don't have that context, being sick can feel "normal" in the sense that you don't have anything to validate your physical state against. Particularly with dozens of doctors and medical tests telling you there is nothing medically wrong with you.
It's only when you look at others and notice how they aren't struggling with the same fatigue, functional, neuro and immune issues, that you can recognize that there is something very different and unwell about yourself.
Yes, adult onset for me. I don’t have dozens of doctors and tests telling me that nothing is wrong. They would ALL be fired if they were that incompetent. I am sure there are many good reasons that some PwME must tolerate ongoing invalidation from the medical profession. I only know from my own narrative, which is I am a fighter, and don’t take “no” for an answer. And I won’t stop fighting until I am back to my pre ME baseline, period.
I can look at old pictures and recall when I was a fully capable person. I also remember how easy things used to be, pre ME, and how they are now a time consuming struggle to conquer. But I also note when I can complete a few small tasks, that just a few years ago, I was too ill to do.
I realize I am more of an oddball on this forum, because many folks from the UK have been seriously harmed by gross negligence from their government.
This is exactly the goal of PACE and LP, very well put
I hear what you say, @MErmaid, but given that there is no cure for ME, being a fighter is not a solution for many of us. However hard we try to pace carefully, to test different symptomatic treatments, even to experiment with speculative treatments that have not been researched, our health continues to decline.
For many of us, accepting this is how life is for us at present and making the best we can of it is all we can manage. Especially, perhaps, as you say, in the UK and other countries where there is no medical support for many of us because of false beliefs and inappropriate guidelines.
However I don't think this is what David Bell's article is about. I thought his point was that many people who are first ill as adolescents and make some recovery after a few years, do not realise themselves in adult life that their limitations are because of continuing illness, and accept it as 'normal' even though they are far less active than their healthy peers.
Describes me perfectly, and it's only in recent years that I'm realising how well it does actually describe me. When you have known no different for all of your teen and adult life, it is very easy to accept that, as has been said to me by GPs, that everybody is different and my normal is to have a lower energy level, and there is nothing wrong with me. And due to this, I pushed to achieve as much as I could, because I couldn't harm myself by doing that now could I??
I have sent maybe eight thousand letters on behalf of an ME/CFS group to former enquirers to the group including people who attended meetings plus some lapsed members. Most of these letters were sent 10+ years ago when few people would have been donating to groups in other countries particularly those people out the loop. We were the only group in the country looking for funds from patients (the other group uses scratch card sellers on commission) and the only one with a research fund. Apart from people who joined (around 10% except in recent years), these 8000 letters only resulted a handful of donations. There could be different reasons for this e.g. the letters have focused on getting new members rather than donations. But still it seems to me likely a lot of people stop caring about the cause. This would be more likely if people either see themselves as recovered or don't see their ongoing impairments as that significant.
I think it is possible with further advances in the science, more people will see themselves suffering from a serious condition (rather than something they have recovered or largely recovered from) and this will help the cause.
Or they are too sick or too poor to get involved or donate.
If they are very sick with the illness all the more reason to donate to the cause.
Some could be too poor alright.
Edited to add: Though others were married and didn't seem to be particularly poor. Some would sometimes get in touch again after they had a setback.
Yes, i had a fighting spirit for a number of years, i fundraised, sold my house and traveled abroad three times a year to see a specialist in M.E.
Sadly for me, it became clear i was getting worse from the failed treatment attempts and the travel. I am now considerably sicker than before i started and have managed to step up my MCAS so that that now rules my life pretty much all the time, as well as having severe M.E.
I dont think Dr Bell is telling anyone how to live their lives. Its a research study, and more research is needed in the area of progression and outcomes.
Or are time poor. When I was still able to work full time, I wouldn't have had time to get involved with anything, my time was spent working and recovering. At that time though I hadn't even started exploring any sort of ME community, online or otherwise, and therefore wouldn't have known that donations are so desperately needed - if I had, I would like to think that I would have donated.
Sometimes my cognitive function just simply doesn't allow for even very simple tasks - and I would be unable to cope with donating electronically. Let alone dig out a cheque book etc. Explaining what I wanted to do so my husband could do that for me (on top of everything else) would be beyond me.
In the early days like @Andy when I had better function, I was just desperately running to stay in the same place and stop my life falling apart. Also (because I only knew what I had read about ME in the papers - I wasn't really that sick - right? )
So I think the folk at either ends of the spectrum may be less likely to donate.
Just following on from my earlier posts, I think the lack of hard science could influence how people who have improved see things. I speculate that some people who have improved don't donate or fund-raise as they see the illness as treatable, other people just need to do whatever it is they have ascribed their improvement to including alternative therapies which may not have made any difference. Some people can also be lucky e.g. get diagnosed early and are able to listen to their body.
And also these people may still not be objectively close to 100% so one shouldn't be able to read into their own story that it is totally treatable.
On a related note, if you had childhood or teen onset, another Dr. Bell article, ME/CFS In Children, is worth a read as well.
Dr. Bell describes many symptoms I've never read or heard about anywhere else: such as a mono-like viral infection, facial flushing, lymph node pain, headache, abdominal pain/distress, and symptoms resembling ADD. Symptoms that resonate strongly with my experience.
Dr. Bell also talks about lack of reporting post-exertional malaise
Also, the (sometimes) futility of trying to determine actual time of onset.
ME/CFS in Children – by David S. Bell, MD
I don't want to edit much messages people have liked so thought I would write this here as I want to highlight that I don't expect everyone to be able to donate or fundraise. Some people can be in difficult financial circumstances, I know and accept that.
I have just found it interesting to note that when people's circumstances improve at least healthwise, which would often mean their financial circumstances improved and would mean they might have more energy for fund-raising, they actually seem to contribute less on average. I have heard people say before you shouldn't look for money from the more severely affected. Unfortunately it seems to me you can't rely on people with ME to donate or fund-raise when their health improves. Indeed people's health may not objectively improve: people can just adapt to the illness and then care less about the cause. It can probably be healthy not to be too focused on finding the cure but I still get frustrated that a lot of people who have got ill seem to stop caring, the numbers interested at any one time are relatively small.
I know what you mean @Dolphin . I know someone who asks me questions about what's going on with regard to research and advocacy etc. She's fairly high functioning and while she is still most definitely ill, she does not actually seem to realize how comparatively well she is.
She always says she wants to do more and get involved etc. Bemoans how we are treated. She doesn't work but has plenty of hobbies ...but still doesn't take the time to get involved. Most of the hobbies cost a bit so she probably could afford the odd small donation here and there too. She's comfortable financially.
She doesn't donate but is a member of a charity as she wants to contribute financially. Sadly, the charity she pays membership fees to is....AfME!
I have tried explaining the politics and she always says "Oh yes, I must look into that and keep up with what's going on.". Never happens though.
Waiting for someone else to do ALL the hard work for her.
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