What Happened in the early eighties?

[jaariel]

I'd like to share my story because it reflects almost exactly what so many people w/CFSME have also shared.
In appx. 1986, at age 20 I noticed i was starting to feel fatigued and sickly more often than before, and certainly more than my peers. I was working full time and going to school, and on wknds, I would happily collapse into 12 hr rounds of sleep to prepare for the week to come. To my utter shock, one Sat afternoon, several of my friends came over, woke me out of bed to confront me about "isolating" myself so much! They were worried that I was depressed or hiding some deep secret that was causing me to be "anti-social". I was completely dumbfounded! I tried to explain that I was just tired, but they insisted that my "tired" was not normal.

So fast-forward a couple of yrs, and of course, my symptoms increased, and by that time I had met a very sympathetic dr. who was not a cookie-cutter MD. He believed in alt therapies, and he was the best listener I'd ever found. So I went in to see him & I told him every symptom I'd been living with for yrs. He listened intently & went to consult his medical books--this was before the Internet was commonly used--and while he was in the other room, he handed me a Depression screening questionnaire. I remember many of the questions asked about physical symptoms: body aches, fatigue, being disoriented, headaches, etc. along with emotional ones like feeling sad, lonely, ashamed, guilty, etc.

When I gave him my answer sheet, he got a funny look on his face. "well, here's your problem: you're depressed!" he said. And he further explained that new SSRIs were proven to help all these symptoms.
MY REPLY WAS THAT MY CONDITION WAS NOT MENTAL/EMOTIONAL, BUT PHYSICAL!
I SAID THAT IF MY PHYSICAL PROBLEMS COULD BE FIXED, MY MENTAL ONES WOULD CLEAR RIGHT UP!

His reply: Depression IS A PHYSICAL DISEASE! Once the depression was treated, my physical symptoms would clear up too--

By that point I was too tired to argue, so I accepted the 6-week Prozac starter kit. I began Prozac that day, and lo-and-behold, IT WORKED!
By the 3rd week I felt better than I had in my whole life! BUT (and I'm sure many of you can fill in the rest)--at some point down the line, it QUIT WORKING.
So, next came Zoloft, Celexa, etc., etc., etc. And none of them ever worked like that first experience w/Prozac...

Oh, and BTW, the entire time I was being fooled by anti-deps, my CFSME was progressing...now I'm lucky to have 2-3 good days a week. And by good, I mean out of bed, puttering around for a totL of 5-6 hrs. If I have to go grocery shopping, that is the only thing I can accomplish that day. Right now I've been dx with CFSME due to my symptoms & my very high EBV count.

 

[heapsreal]

I agree with you jaariel, anti-d's can be helpful but can also give u false energy like u said and just run u into the ground even more. If the doc could have diagnosed cfs and then treat u with anti-d's but told u to still be careful ie pace yourself etc it may ?? have been more helpful, but at the end of the day its not really fixing the cause. Interesting how u got sick in the 80's when cfs was really doing its rounds and u have gotten worse. would be interesting to see a follow up of all the original cfsers from incline village and see where they are at, but then some could be doing better then most as they have dan peterson as there doc.

cheers!!!

 

[Mark]

I've been meaning for some time to post a couple of quick points on this thread, in answer to the question of the thread title.

Firstly, what happened in the 80s was a series of events: the Gulf War, the Incline Village outbreak and the CDC's response to it, and then in response to that, the first document in the open part of the MRC's secret files on ME picks up the story. Wesselys scribbled report there makes it clear that the beginning of this file marks a sea-change in policy, setting out his view - which would have dovetailed well with what had just come over from the US in relation to Incline Village - that ME is likely psychosomatic, a cause will never be found, and crucially that the big issues for the next two decades would be in terms of 'managing' the condition rather than researching the aetiology of the disease.

In summary of that first point: it seems clear that there was a change in policy direction in the UK following on from the CDC's report on Incline Village, and that this marked the beginning of the rise of the Wessely school. The letter I mention at the start of the MRC file seems pivotal to me in this bit of history.

Second point: if we are asking a question about epidemiology, and the rise in rates of a wide variety of neuroimmune conditions, then we should perhaps look a few years back before the 80s when we look for the cause of what happened in the 80s. People born in 1955 would be 25 years old in 1980. People born in the 60s would hit 25 in the 1980s. Around about 25 is a common age to develop ME, but the underlying causes of those illnesses may well lie n events 20-25 years earlier. So when we are looking at an epidemic starting to accelerate in the 1980s, two factors to consider I think would be the timing of the Windscale radiation leak, and the introduction of new polio vaccines during what the secret MRC "S Files" call "The Polio Vaccine Crisis" - a topic which merited several years of special committees during the late 50s and early 60s, although google seems to have almost no knowledge of the phrase "Polio Vaccine Crisis" as used in the S Files...

 

[WillowJ]

I came across something that doesn't explain ME outbreaks but might explain the phenomenon of why why our doctors say, "many Americans are fatigued" (when this didn't used to be a common problem) when they don't have the time/time of day to investigate what's wrong with us...

http://children.webmd.com/news/20110415/high-levels-of-flame-retardants-in-us-kids

 

[SaveMe]

immunization outbreaks?

 

[Tulip]

Does anyone get flashes of the x-files when reading this thread? "cue x-files theme song".

The truth is out there...

 

[Tulip]

I came across something that doesn't explain ME outbreaks but might explain the phenomenon of why why our doctors say, "many Americans are fatigued" (when this didn't used to be a common problem) when they don't have the time/time of day to investigate what's wrong with us...

http://children.webmd.com/news/20110415/high-levels-of-flame-retardants-in-us-kids

I think it is a combination of things as to why more people are "tired" (not sick). Food for starters, there is an over abundence of crap available to eat and drink. High fat, sugar and lots and lots of simple carbs. People just don't seem to understand healthy eating. It wasn't like that in the olden days. They had to walk everywhere or ride a bike and they didn't sit around watching tv or playing the playstation/wii. There was far less pollution, because there weren't that many cars and we now have all these cleaning chemicals to fill our houses with. The list goes on. We need to go back to basics.

The human race is slowly killing itself.

 

[Tulip]

Also in Australia there were a few good studies done which the authorities ignored and blindly followed the health authorities of the USA and UK. There was a positive study on gamma globulin with cfs patients that was never expanded on as well as the Dubbo study which they have twisted into a psychological thing as well. Im sure there were others.

I was put on gamma globulin in 1994 when it was the treatment of the moment, and it did nothing at all. I knew quite a few others that were put on it to and had no benefit from it either. I wonder who they actually studied? post viral people or real me/cfs people?.

 

[WillowJ]

I think it is a combination of things as to why more people are "tired" (not sick). Food for starters, there is an over abundence of crap available to eat and drink. High fat, sugar and lots and lots of simple carbs. People just don't seem to understand healthy eating. It wasn't like that in the olden days. They had to walk everywhere or ride a bike and they didn't sit around watching tv or playing the playstation/wii. There was far less pollution, because there weren't that many cars and we now have all these cleaning chemicals to fill our houses with. The list goes on. We need to go back to basics.

The human race is slowly killing itself.

I agree that those are factors in why people are tired, too. I meant to say one of the reasons why people have (non-ME/CFS) fatiguing illness, tho (thyroid disease, etc.) But not playing outside probably contributes to low VitiaminD.

There actually has been a lot of pollution prior to cars though--people used to use wood and coal for heat and these have very toxic smoke. Factories used to be unaware of air and groundwater pollution, people used to work in cotton factories and breathe cotton dust, etc. The air is actually a lot cleaner now than it was at the height of the Industrual Revolution.

But yes, people do not eat right now, often don't get exercise (and for safety reasons this has become difficult), and overuse TV and video/computer games. And use a lot of toxins, often in the name of safety, beauty, convenience, and "better" food production. I agree that humans have a lot of unhealthy habits and need to change things.