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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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ME/CFS I think has struck my family yet again

Today I met one of my first cousins who I havent seen in 15 years and found out she's on disablity with "an unknown illness". She's just turned 30 (I dont know how long she's been on disability for). Neither us knew the other was even ill.

She didnt know what ME/CFS was and told me she gets a lot of different symptoms including she's been diagnosed with IBS. (I didnt have a big discussion about her health as it was a family lunch). Anyway from our short discussion about the illness she's on disablity for but her doctors cant work out what is wrong.. Im thinking that the ME/CFS has stuck another family member.

Sadly she's the 4th of this family generation which is aged 40 and down (if you include FM in my family and not just ME.. its 5 family members if my nanna (dads mother) is included), my other first cousin affected is also the child of one of my fathers brothers.

Three of us disabled and on disablity cause we cant work when we should be in the prime of our lives... with my sister too at times appearing to have CFS (in her case she dont fit the CC CFS defination) and if she wasnt married, she may have been on disablity to.

Im just right now kind of reeling to find out that yet another first cousin is chronically sick and now on disablity with what appears to be probably this.


Ive been thinking about the prevelence in this family generation.. Nanna with the FM has 17 grandchildren.. 15 of us are female... four out of 17 = so its hit just over one in every four of us.

(actually tally's with what Ive read the odds are with having a child with ME/CFS if one has ME/CFS oneself.. but its skipped a generation completely.. generation before in my family were all male.. dad was one of 5 boys).
Hi tania, I am sorry to read this. I worry that other members of my family are sick too, but I think the problems are frequently misdiagnosed as other things ... although of course the case can be made that ME/CFS is kind of a misdiagnosis too. I wish we had answers, I wish we would get the funding that other diseases of similar impact get. Bye, Alex
I have a non biological aunt that just got it in recent years. This week, we were on the phone, and she said to me, "All these years, I never really understood what you were going through, and I never understood how much pain you were in. And I always used to tell you to take this or that for it. But now I KNOW." She only really understood once she got it.

My other relatives, I have one biological cousin who has it kind of halfway. She can still have half a life. And she's usually in alot of denial until she ends up couchbound and then calls me whining. The rest of my relatives, no one has it. My father got hit with alot of thyroid and heart problems, but he never had this. He's got the fatigue now from the heart stuff, but till he had that, he was okay.

My mother, she had it halfway till she died. She had fibro, she had tons of autoimmune problems. She had heart problems. Ultimately, this disease definitely contributed to her death. She was taking all kinds of junk for each symptom and the meds really did her in.
My other relatives, I have one biological cousin who has it kind of halfway.

Ive been thinking a lot lately about the different degrees of the "unknown" illnesses in my family and I must say Im starting to change my thoughts of what I think about true/historic ME or whatever ones wishes to call it.

Im thinking due to my family observations that this dont always manifest into an illness fitting the Canadian consesus doc defination but rather may for some be more mild eg "halfway" as you put it in some.. possibly even half the cases may be getting it milder? Bad enough to be on disablity but still not meeting the CC CFS.

It would be more likely if members of my family do have the same kind of medical issue going on then a heap of different "strange, chronic, "doctors cant work out what" kind of illnesses. So maybe true ME can manifest much milder in some cases and not even fit the Canadian consensus defination in all in some? Maybe half of causes of it are meeting the CC CFS but other half arent? (if i think of my own family as example).

I think Im going to stop judging those who dont meet the CC CFS as probably having a different thing as just possibly many do have same thing but not as bad.

My cousins case has manifested quite psychologically and she's been told her issues are psychological and I think she probably has got psychological stuff going on.. thing is she has a lot of physical stuff as well eg IBS, food issues etc .. so I dont think they should put all her various symptoms down to a psych. issue.

We all know that ME manifests differently in what symptoms are the worst for individuals.. some it could be virus symptoms sore throats fever, others it may be pain eg in the muscles .. others it may be the fatigue symptom or dizziness most dominant, while for others the MCS may become the most dominant symptom... maybe some do have mental health most dominate with this issue? Seeing what symptom is most dominant in this illness varies, who's to say that mental health issue may not be the most dominant symptom for some?

I think anyone who has an "unknown" illness restricting their life with a large symptom complex should be thought of possibly having ME no matter what symptom is dominating. (i think for my cousin its her bowel troubles, depression and anxiety dominating with the other symptoms thrown in on top).
From what I've seen over the years, there are about three real categories. I've seen people in comas with this, that would be the most severe, and the ones who are fully bedbound and literally cannot leave the bed. So all that would be category one. Then you have the housebound. Those of us who often times did start out bedbound, but then we got to a plateau of chronic housebound. So we would be category Two. And the third category would be the halfway people. They get hit, but alot more mildly than we did. They still cannot fully function by can often times still work part time, or they work more hours but suffer with tons of pain and other stuff. I'd say they are Category Three. There's almost a four. I have seen people who got sick and threw it off like it was water. The guy who infected me in 91, he was mildly sick with a sorethroat, he did not end up chronically ill. Then my friend's cousin, he got sick at that same time my friend did, but within two years, he was fine. There was no question that he was infected with our illness, but somehow, his body kicked it within two years.

I think genetics plays a large role. There are always people who have a natural resistance to different diseases. If you look at any epidemic throughout history, including the Black Plague, there were always survivors. There were always people who were even infected and lived. We just saw it with Swine Flu. Some people did die of Swine Flu, but not everyone did. Some people got hit harder than others. It has to be part genetics.

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