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I Have Chronic Fatigue Syndrome - Emma Blackery - YouTube Video

SOC

Senior Member
Messages
7,849
@halcyon @SOC who cares what severity level she was diagnosed with. Where are you going with this?
Did I comment on this thread? :confused: I don't remember doing so, and can't find a post by me when doing a search on this thread, so I can't comment on where I might have been going with something I don't remember saying.

Cognitive dysfunction is a bitch.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
Did I comment on this thread? :confused: I don't remember doing so, and can't find a post by me when doing a search on this thread, so I can't comment on where I might have been going with something I don't remember saying.

Cognitive dysfunction is a bitch.

Sorry to disappoint you @SOC but unfortunately I don't have any cognitive dysfunction when it comes to you. The only posts in this entire thread you liked at the time I wrote this were @halcyon 's which were the ones I was responding to. Sorry even if you don't post anything the fact that you did this means effectively you were in agreement!
 
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halcyon

Senior Member
Messages
2,482
Your original post is written stating that you feel her doctor misdiagnosed her ME/CFS severity level, not possibly misdiagnosing her as having ME/CFS, which it seems in your response that this is what you meant?
Sorry for the confusion, I meant both as possibilities.
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
As a relatively new person to these forums I find this thread disappointing. By the time I got here I had been judged, classified and discriminated against by family, friends, doctors, pretty much everyone. I thought this was a safe haven from all that. I don't have the energy to engage in the whole debate but had to say this: if this was someone's first day on these boards, and they weren't as severe as some, do you really think they would stay? I need these forums for my sanity and to learn about my illness, but if this was my first time here or I didn't feel I feel into a severe enough category, I'd never come back. Healthy debate is good but I want everyone to feel welcome here. If the woman in this video came on here she would probably feel pretty horrible.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I am aware there are different severity scales. I am either moderate or severe depending on the scale. Since we do not know what scale here doctor was using its hard to make any judgements. Its enough for me that people are sick. There are always people more sick or less sick than I am right now .. including me at different times.

At the lower end of severity many can push through and hold a full time job, but struggle with it all the time. This is not just at work, but travel, of an evening, the weekend, and even on "holidays". Not much fun having a holiday consisting of resting up for going back to work and not much more.

A doctor might also give a rating based on the other patients in a practice without consideration for formal scales. In the UK this is likely to be even more problematic given the Oxford criteria is probably being used, either formally or informally.
 
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halcyon

Senior Member
Messages
2,482
Since we do not know what scale here doctor was using its hard to make any judgements.
Perhaps I don't understand as I'm not in the UK, but I thought that NHS doctors were mandated to use the NICE guidelines when diagnosing and treating this disease?
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I don't recall NICE guidelines on severity, but its been a long time since I looked into what NICE says. In any case I am not sure anything NICE recommends is mandatory. Its just easy to justify something if NICE makes a recommendation for it.

We can be very grateful there are many UK doctors who do not see the NICE guidelines as mandatory, as those guidelines are woeful.
 

worldbackwards

Senior Member
Messages
2,051
Perhaps I don't understand as I'm not in the UK, but I thought that NHS doctors were mandated to use the NICE guidelines when diagnosing and treating this disease?
As someone who lives and was diagnosed in the UK, I can reliably inform you that they make it up as they go along, because no one really cares enough to stop them.
 

halcyon

Senior Member
Messages
2,482
I don't recall NICE guidelines on severity
They do spell out severity, defining each level, and use the various severity levels to make specific recommendations. For example, they suggest CBT/GET for mild and moderate patients, they state that moderate or severe patients may need wheelchairs, etc.
 

Dolphin

Senior Member
Messages
17,567
Perhaps I don't understand as I'm not in the UK, but I thought that NHS doctors were mandated to use the NICE guidelines when diagnosing and treating this disease?
I imagine most wouldn't look up something like how severity of a condition was defined when dealing with a patient.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
They do spell out severity, defining each level, and use the various severity levels to make specific recommendations. For example, they suggest CBT/GET for mild and moderate patients, they state that moderate or severe patients may need wheelchairs, etc.
The DSM gives detailed recommendations, as does the ICD, on diagnosis. Its an open secret that doctors almost never look at them. I suspect NICE is similar. Its one of the problems we have with getting ME definitions accepted. Doctors typically do not even look. In one example a whole lot of doctors were sent an advisory booklet on ME/CFS. On followup most of them found the bin to be best place to file it.
 

halcyon

Senior Member
Messages
2,482
As someone who lives and was diagnosed in the UK, I can reliably inform you that they make it up as they go along, because no one really cares enough to stop them.
Yeah I guess I misunderstood the nature of what NICE is. It seems to be a slightly more official version of the US IOM. I guess their guidelines are more recommendations rather than rules and the NHS is free to ignore them, just as the NIH is free to ignore the IOM's recent report.
 

Dolphin

Senior Member
Messages
17,567
Yeah I guess I misunderstood the nature of what NICE is. It seems to be a slightly more official version of the US IOM. I guess their guidelines are more recommendations rather than rules and the NHS is free to ignore them, just as the NIH is free to ignore the IOM's recent report.
The NICE guidelines would influence treatment: questions could be asked of doctors if they prescribed drugs not on the list. But mentioning a particular severity of illness would be different I think.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Perhaps I don't understand as I'm not in the UK, but I thought that NHS doctors were mandated to use the NICE guidelines when diagnosing and treating this disease?
UK doctors tend to look at you and shrug. That's on a good day at the doctor's.

Yes, doctors tend to stick to the NICE guidelines, but they don't read the whole guidelines. I would guess that they have condensed treatment guidelines on their computer systems that tell them to refer a patient to a fatigue centre and prescribe sleep and pain meds where needed.
 
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SOC

Senior Member
Messages
7,849
Sorry to disappoint you @SOC but unfortunately I don't have any cognitive dysfunction when it comes to you.
What does this mean? I was talking about my cognitive dysfunction, in particular my inability to remember commenting on this thread or to find the post I thought you were alluding to. I can't see what that has to do with your cognitive function.
The only posts in this entire thread you liked at the time I wrote this were @halcyon 's which were the ones I was responding to. Sorry even if you don't post anything the fact that you did this means effectively you were in agreement!
Ah, I see. You were basing your comment on my Liking other comments, not on anything I actually said. Now I understand anyway.
 
Messages
15
Location
Sacramento,CA,USA
thanks for the post to the youtube video. ive seen many similar videos, but none with so many subscribers. i havent read all the comments, but the response seems to be mostly favorable with only a few trolls.

i was wondering if anyone had messaged her with any resource links, or links to here?

as a side note i can understand bieng worried about the perception of others on what the severity of ME/CFS is as it applies to her. but i did like how she explained there are people much worse than she is. for me i was like her in severity for 4years, then i went into denial,pushed myself,and went into a permanent crash going on 20yrs. i think she was lucky to get fired and now can work from home.

i often wonder how different things would be if there was internet when i first got sick. access to research,support groups, social groups. there was only dialup bbs. god im old. rofl :p
 

redaxe

Senior Member
Messages
230
As someone who has a milder form of ME/CFS I can understand the frustration that the moderate/severe crowd feels. Someone with mild-CFS/ME who can still drive or travel or work or study to some degree probably has more opportunity to get their stories into the media and they inadvertently might make the disease look less serious than it can be compared to someone is housebound or bed-bound.

I've been well enough to be able to travel to the USA for a few weeks to see a CFS/ME specialist and able to rent a car and travel around somewhat and then visit Miami while I was waiting a couple weeks for my test results to go through.
At Miami I was able to stay at a Hostel, do a few tours, enjoy the beach and even go to a couple of nightclubs but the entire time it was still completely obvious to me that I had far less energy than the rest of the tourists passing through the hostels. I'd have to rest throughout the day and the evening if I was going to visit a nightclub and even then after a couple hours on my feet I'd feel weak and end up sleeping in way later than anybody else in the Hostel. I remember getting up to go on a tour bus to Quay West and then feeling so tired on the bus that I slept almost the entire 3.5 hour trip even across the famous bridges which I'd always wanted to see. Having to go to sleep when other tourists begging me to go clubbing - people that had been doing that several nights straight with no punishment other than a short hangover.
Whereas I felt like a 70 year old. Well enough to get involved in a few things but only just. Was I able to blend in well enough - I guess so but my lack of energy would quickly become apparent to anybody after I'd gotten to know them well enough.

I can imagine that some would think from this that I don't have real ME but my condition getting to this stage took a lot of study and a bit of luck. I did not get any reliable improvement until I started B12 injections 18 months ago and got lucky with some antibiotics. I had very little help from doctors, every treatment that has helped me I've basically had to research and request from practitioners.

But before my B12 improvement it was horrible.
I couldn't understand why I could no longer walk without feeling exhausted, let alone exercise. I remember one day trying to do a few laps around an oval and the next morning feeling almost paralyzed with weakness. It took days to recover from that and I found that on many days all I could manage was walking around the block once. Many times I remember waking up and dragging myself to have a shower and then flopping onto the couch in complete exhaustion and not even having the energy to have an appetite.
Too tired to eat, too tired to sleep, too tired to walk. I tried other activities like prospecting and found that camping in arid areas would alleviate most of my symptoms until I returned back home. I remember at the club meetings trying to standup and talk to people when I felt so weak I was about to collapse. It seemed like my bones had turned to liquid.

I remember being unable to stand for more than a couple minutes at a church service and nearly having an accident trying to drive home afterwards when I drove through a Yield/Give Way sign without stopping because my brain fog was so bad I could barely process the information required to drive a car and didn't even see the sign.

I suppose I am fairly lucky compared to most with ME/CFS. Maybe because I lost my job soon after I got sick and didn't have the stress of trying to cope in a demanding job. Or maybe because of my background I researched as much as I could until I read about B12 injections - this was only possible with the internet - I'd shudder to think how I would have coped if I lived 30 years ago and got this as there was no Phoenix Rising. Perhaps I also got lucky finding out that camping in the desert seemed to alleviate symptoms giving my immune system the occasional holiday. Or maybe because we understand a bit more about the illness now it is easier to get specialist help than it was 30 years ago - at least in the USA...

So yeah the grass is greener here compared to someone housebound or bedridden but the grass looks even greener in the lives of the friends I no longer have because they wouldn't understand what it's like to have this illness. Friends from years ago that have moved on, gotten married, advancing in careers, having children, buying their first house....

And me well I'm basically back to where I was at 18 out of school with the last 12 years of study and work largely coming to nothing. Being out of work for a couple years and in a really tight job market means that career wise I've lost the best years of my life. I've also lost all the social networks and nearly all my old friends which as you get older gets increasingly hard to replace. So I have to face the reality that I may never be able to get married because I probably cannot meet another persons expectations.

So having mild ME/CFS is nothing to celebrate about. I can understand that I have no real comprehension of what is like to be in a state of permanent PEM and confined to bed for months but the illness has swung a wrecking ball through every aspect of my life so even for someone with mild ME/CFS life isn't a walk in the park and it's not enviable. In fact family see me able to do things and they automatically assume that there's nothing wrong with me so that adds to the pressure and stress on me from family members that just don't get it. People can't understand that I need about 11-12 hours of sleep a day just to be able to function the rest of the time.
The amount of sleep I need to function semi-optimally seriously cuts out a lot of the activities that a healthy person can engage in and does significantly limit your opportunities.
 
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EtherSpin

Senior Member
Messages
257
Location
Melbourne , Australia
It's a bit difficult to diagnose at a distance. She also talked about reducing her hours down to three hours a day in a job from which she was eventually dismissed. That doesn't really fit mild either.
that rang true for me, the last time I was "mild" was 8 years ago but I stopped work in 2013 - I was yelling at myself inside my head to keep moving, literally willing "left,right,left,right" as I swung my legs to walk down the work corridor whilst smiling pleasantly at coworkers - hiding in store cupboards with the pretense of getting tools,paper etc out but really putting my head down to divert blood flow back to it (I didnt yet know what POTS was) - I'd be in agony on wheely stool chairs working with my students but putting on a nice demeanour but my home life was gone,social life gone. every non work moment was spent recharging for work and there would be massive crash cycles where Id use up all my leave and then lose pay by taking more - Im worse now but not all that much, I do far less so that the energy is averaged out and im less prone to infections my average has me at moderate to severe. no driving,music,reading,exercise etc
sounds like she is scrambling to survive and I think unless she has intervention she will soon enough be unable to do any of the things she considers her career or sources of her sense of usefulness and esteem.
 

leokitten

Senior Member
Messages
1,542
Location
U.S.
As someone who has a milder form of ME/CFS I can understand the frustration that the moderate/severe crowd feels. Someone with mild-CFS/ME who can still drive or travel or work or study to some degree probably has more opportunity to get their stories into the media and they inadvertently might make the disease look less serious than it can be compared to someone is housebound or bed-bound.

I've been well enough to be able to travel to the USA for a few weeks to see a CFS/ME specialist and able to rent a car and travel around somewhat and then visit Miami while I was waiting a couple weeks for my test results to go through.
At Miami I was able to stay at a Hostel, do a few tours, enjoy the beach and even go to a couple of nightclubs but the entire time it was still completely obvious to me that I had far less energy than the rest of the tourists passing through the hostels. I'd have to rest throughout the day and the evening if I was going to visit a nightclub and even then after a couple hours on my feet I'd feel weak and end up sleeping in way later than anybody else in the Hostel. I remember getting up to go on a tour bus to Quay West and then feeling so tired on the bus that I slept almost the entire 3.5 hour trip even across the famous bridges which I'd always wanted to see. Having to go to sleep when other tourists begging me to go clubbing - people that had been doing that several nights straight with no punishment other than a short hangover.
Whereas I felt like a 70 year old. Well enough to get involved in a few things but only just. Was I able to blend in well enough - I guess so but my lack of energy would quickly become apparent to anybody after I'd gotten to know them well enough.

As a mild-to-moderate person like you I want to ask you a few questions because I find a major aspect of my illness to be very different. Both you and Emma Blackery have said that one of your symptoms is sleepiness and that you can and must sleep a lot.

For me and I believe many others with ME that is not a symptom. In fact we get the exact opposite this disease causes a complete inability to sleep and intense sleep disturbances even when you are absolutely shattered. I wish I could sleep a lot more because it improves my symptoms more than anything else.

Also for me normally fatigue/tiredness is not a cardinal symptom. The excessive exertion makes physical symptoms so much worse, i.e. feeling totally unwell like I've been poisoned, swelling lymph nodes and flu-like feeling, circulatory problems, muscle pain and soreness, severe headache particular behind my eyes, GI problems, abdominal swelling, complete sensory overload causing pain like my head is going to explode. For me it's all of these symptoms getting worse at once and feeling so unwell, that I have to "shut off" and the only way to feel better is to lie down in the dark with no input. So for me I wouldn't call it fatigue/tiredness more sick/unwell/poisoned feeling. But I can't normally sleep during these times unless I use medication to knock me out.