How many times do I have to hear this?

[Nielk]

Thanks for all the empathy and advice.
I have actually been thinkink, toying with the idea of telling people that I have an inflammation of the brain. It is part of ME and I really think I have this problem from different test results and symptoms. I think they would take that much more seriously. At least, they can't amswer "I have brain inflammation all the time too.

I have learned not to say "I have Chronic Fatigue Syndrome" as that name and the word "fatigue" draws way too much negative reaction. I always say "Myalgic Encephalomyelitis," followed up with "it's a neuro/immune disease/ the cause isn't known yet/ there's no cure yet, etc. If you say an inflammation of the brain, I think people can get hooked into wanting to know more, why aren't you in the hospital etc. What's important with regards to other people is 1) develop some pat answers that you can pull out at a moment's notice to get people off the topic; 2) develop some inner shield for when it's family you're stuck with, or excuse yourself from the situation, because emotional stress can be as bad as physical exertion: it will make you sicker; 3) instead of focusing on the person who said something that upset you, deliberately try to shift focus to comforting the hurt inner part of yourself that needs comforting. I know you're also searching for meaning to the suffering: maybe this could be part of the learning, a strengthening of the spirit?

It's grea advice Mandala. Thank you. I have just been thinking how pathetic it is that some of us are so ill, yet we have to explain to people HOW SEVERE it is otherwise we're just laughable.
I know in my community, if they hear someone has cancer - any cancer, the whole community pools together to try to help that person whether financially or taking them to the doctor. They arrange meals for them and if they have little children, they arrange teenagers to babysit for them. They talk about the person how brave they are and well they are managing considering..
No one else in my community has ME/CFS. People here know nothing about it. I feel like the short kid in the back of the class in grade school. jumping up and down to get the teacher's attention. I also want to be brave. How can you seem brave in their eyes when they laugh at your illness?

 

[Ember]

I don't think that if you tell someone you have an inflammation of the brain that they will tell you that what you need is to get out more and breathe fresh air or excercise. What do you think?

A couple of things have been working better for me lately. First, because I do meet the ME criteria, I never, never talk about CFS any more (except to say sometimes, parenthetically, that ME used to be called chronic fatigue syndrome). The name ME means pain and inflammation of the brain and spinal cord, so if people ask, I can explain.

More importantly, I try not to take the ignorance personally now. In the back of my mind, I remember that I'm speaking for millions of sick and abused patients. It's simply not acceptable to me any more for anyone--doctors, family, friends, neighbours, anyoneto collude in the abuse. That inner shift allows me greater poise in engaging so long as I choose and sufficient ease to walk away when I must. I respond to ignorance far more effectively as an ambassador than I do if, in the moment, I mistake it to be all about me.

 

[alex3619]

Hi Ember, I am with you on this. Bye, Alex

 

[Mandala]

More importantly, I try not to take the ignorance personally now. In the back of my mind, I remember that I'm speaking for millions of sick and abused patients. It's simply not acceptable to me any more for anyone--doctors, family, friends, neighbours, anyoneto collude in the abuse. That inner shift allows me greater poise in engaging so long as I choose and sufficient ease to walk away when I must. I respond to ignorance far more effectively as an ambassador than I do if, in the moment, I mistake it to be all about me.

Thank you, Ember, for sharing this. I had not thought about the "ambassador" approach and why it is so important. I'm going to work on that inner shift!

 

[WillowJ]

I think the brain inflammation is a great tactic. Starting with ME and/or brain inflammation generally makes the conversation go better.

Thanks, Alex, for the addition to my illustration. That's a good point.

I am with you all on the ambassador approach.

 

[taniaaust1]

I wouldnt be game to say to anyone that I have brain inflammation as its likely to get a response of "how was that inflammation diagnosed?"

I just deal with such people by pointing out there are many subgroups in CFS due to being a term in which many things have come under including ones which arent really CFS but ME people and then ask them which subgroup was the one who was helped by ??? (whatever they said). That usually leaves the person who made the suggestion to me lost for words and they usually wont say anything more.

If they have really annoyed me, I will then often go into a rave about it all and about how people keeping lumping those with ME into the this group as they dont understand the ME/CFS difference and how GET and CBT are good for "some" CFS people but for those who have ME they can get bad relapse due to it and arent helped by it etc etc.

 

[alex3619]

Hi Tania, one of the replies you could make on brain inflammation is that its easy to diagnose, they just have to remove your spinal chord and brain and look at it under an electron microscope ... but you are not ready to volunteer for that yet. Bye, Alex

 

[Calathea]

I thought ME now stands for myalgic encephalopathy rather than Myalgic Encephalomyelitis, due to the brain stem inflammation theory not holding up in the long run?

 

[alex3619]

Hi Calathea, my understanding is the opposite. Most autopsies on brain stem and spinal chord that go looking for this do indeed find inflammation. In addition, most experts call it myalgic encephalomyetlitis now, not encephalopathy. Encephalopathy has not been widely accepted. It may be that in the UK in some circles encephalopathy is more widely used, but then there are a number of proponents of that view in the UK. Bye, Alex

 

[Calathea]

It's not in common use, I don't think it ever really took off. Maybe it was popular briefly, then further study pointed them back to encephalomyelitis?

 

[urbantravels]

How many autopsy studies have actually been done on people with ME/CFS?

 

[alex3619]

I thnik there have only been a handful of autopsies that looked at spine or brain under an electron microscope and other sensitive techniques. If I recall correctly, there were four in the last year or so, and of those three showed damage. Another autopsy a few years ago showed heart damage. I think there were some more, but I don't recall the detalis, but then I probably haven't even heard of many of them, only those that were made public. This really needs a large scale study, well funded, over many years and with lots of volunteers. Why not combine it with a study on the long term course of ME? So there are not large numbers involved, but most show damage. Its the best evidence we have, though I would prefer better. Bye, Alex

 

[*GG*]

I wouldnt be game to say to anyone that I have brain inflammation as its likely to get a response of "how was that inflammation diagnosed?"
QUOTE]

Would a SPECT scan show this or is that just blood flow issues in the brain?

GG

 

[November Girl]

Hmmn... my post seems to have evaporated. I've thought about just telling people I have damaged mitochondria. Then they can't tell me how their friend recovered from the same thing.

 

[hurtingallthetimet]

Thanks for all the empathy and advice.
I have actually been thinkink, toying with the idea of telling people that I have an inflammation of the brain. It is part of ME and I really think I have this problem from different test results and symptoms. I think they would take that much more seriously. At least, they can't amswer "I have brain inflammation all the time too. Maybe, they will realize that this is a severe disease that you don't play around with. I don't think that if you tell someone you have an inflammation of the brain that they will tell you that what you need is to get out more and breathe fresh air or excercise. What do you think?

isnt it horrible how ill we all are yet the illness is treated alot of times like it is nothing at all??? ive tried to think of other ways of explaining to my extended family...they think because i look fine i should act fine...they dont understand how sick i am...when i first found out what i was ill with some doctors and people didnt even believe in fibro/cfs....i told my family what was wrong with me and my sister was like "oh thats nothing ive heard its not even that bad or real"...i keep getting sicker and sicker even looking back a few months or 6 months i keep getting more fatigued and doing less and less...yet my sister friend who was diagnosised with ms..which is a terrible illness and im not comparing one illness to the other but thankfully my sister friend has had very few problems and last i heard still works and is active, my sister was very upset to hear she was ill and ran out and bought her books and made her a huge gift basket and offered to constantly help her in anyway and her friend wasnt having any problems at that time...i just dont understand it....fibro/cfs can be for many and has been very life changing for the worse for me and debilitating...but people so many times act like it is nothing...

i dont try to explain anymore if im asked how i am i say "fine" i pretend to be happy and fine...i dont live close to my family so they dont know that i stay in my house 98% of the time only going out to get grocerys or shopping for kids or doctors vists..they dont knwo i cry every single day...and take morphine to make it through the pain....as debilitating as fibro/cfs is and can be its amazing how people react to it...just blow it off etc...

 

[Nielk]

If you have people who are genuinely interested to KNOW waht it's all about, the following video I find very powerful.

[video=youtube_share;r0w9-eQ_fKQ]http://youtu.be/r0w9-eQ_fKQ[/video]

 

[Nielk]

I thnik there have only been a handful of autopsies that looked at spine or brain under an electron microscope and other sensitive techniques. If I recall correctly, there were four in the last year or so, and of those three showed damage. Another autopsy a few years ago showed heart damage. I think there were some more, but I don't recall the detalis, but then I probably haven't even heard of many of them, only those that were made public. This really needs a large scale study, well funded, over many years and with lots of volunteers. Why not combine it with a study on the long term course of ME? So there are not large numbers involved, but most show damage. Its the best evidence we have, though I would prefer better. Bye, Alex

I know of one. A patient of Dr. Enlander's who died. They did an autopsy on her and found HHV-6 in the brain.

 

[biophile]

Thanks Nielk. You mentioned something important that I forgot: GET studies do not include severely affected patients. The closest thing to it was the FINE Trial, which was basically a failure. The PACE manuals claim that the deconditioning model of CFS should apply just as much if not more to severely affected patients.

Yep, PEM and PENE involves so many symptoms beyond DOMS and can occur without it. For example, this year I trialled low levels of resistance training, which I'm still writing a long blogpost about. I experienced some relatively mild DOMS at first but my muscles adapted to that and I no longer experienced DOMS at the workload I was at and was gradually increasing the workload. However, other body systems did not adapt with it, PEM and PENE occurred anyway despite this adaptation to DOMS, and in direct proportion to the workload rather than severity of DOMS.

As I was being cautious it took time for adverse effects to cumulate into an obvious reduction in function and quality of life. I backed off and tried again but there was simply no "getting used to it as the body adapts to increased levels of activity" hype as claimed in the PACE manuals, there was no signs of adaptation to PEM and PENE. It is not normal for a healthy sedentary person to experience widespread PEM and PENE for days or weeks from low levels of exercise which work the muscles at or below the DOMS threshold. It is insulting when biopsychosocialists suggest patients' limitations from post-exertional symptoms are mainly due to the discomfort of DOMS, especially when it is mild or isn't even present!

My experiences of post-exertional symptoms include central exhaustion and flu-like aching and sub-fever sensations, increased cognitive impairment and accompanying flu-like brain fog malaise which can seep into the dreamscape (and in worse case scenario nightmares), increased sensitivities and migraine-like headpain, autonomic disturbances like POTS and temperature issues, dizziness and balance issues, neuromuscular related issues, visual disturbances, etc. Like you said, usually exacerbations of baseline symptoms.

There is significant overlap between post-exertional symptoms caused by physical vs mental exertion, but each type of exertion seems to have its own characteristics or localised effects. I've also noticed that particularly strong brain fog from too much cognitive activity is a good predictor of later headache. Sometimes I'm guilty of crashing because of too much writing for this forum!

Ever since becoming ill sometimes I get spontaneous outbreaks of mouth ulcers, although it doesn't seem as bad in recent times, since upping protein intake (but not too much)? I've heard all the psychobabble about "stress" causing them, but I have not observed a convincing correlation with stress and if anything at all it is physical rather than mental stresses which on rare occasions were suspected of contributing.

 

[Nielk]

Hi biophile,

Very interesting post. Do you have a blog site?

 

[Gamboa]

Sorry if I'm repeating something that has already been posted. I now use the results from the Pacific Fatigue Lab and Staci Stevens and also the work done by Betsy Keller at Ithaca College to tell people that there is proof that exercise is bad for ME/CFS. Both groups have shown that exercise is detrimental to us by doing exercise testing 2 days in a row. It is the second day that shows the PEM that was induced by the exercise done on the first day. Also the Lights have an excellent study showing how cytokines are affected in people with ME/CFS after exercise compared to healthy people and also to those with MS. They have a fantastic one page graph that illustrates it really well. I just show people this and it shuts them up quickly.

http://www.research1st.com/2011/06/02/exercise-challenge-reveals-potential-cfs-biomarkers/

http://www.research1st.com/2011/11/18/pfl-testing/

I'm sure more research will be coming soon from these people and other groups. It will eventually be common knowledge that exercise causes PEM for people with ME/CFS.

Gamboa