Don't lump CFS and ME together

'CFS' and ME comparison chart - The Hummingbirds' Foundation for ...

www.hfme.org/comparisonchart.htm

This chart illustrates the many differences between Chronic Fatigue Syndrome ( CFS) and Myalgic Encephalomyelitis (M.E.). As this chart shows, CFS and M.E. ...

       Check out this website and it totally spells out for you the differences between CFS and ME

Chloe: Frankly, I'm stunned by the incorrect information in the chart of the Hunningbird's Foundation. Again, I hesitate to post this because I don't want to upset you or anyone else on the forum. However, there's a huge amount of misinformation in the chart. For instance, they assert  CFS cannot occur in an outbreak. That's simply not true. The first such outbreak of CFS occurred in Nevada, and was documented by Dr. Cheney and Dr. Peterson, very well-respected doctors in the U.S. The chart also says there's no CNS damage in CFS. Again, not true. Also, I believe it says that there's pain in ME and implies there's no pain in CFS. Again, not true. Same pain. On and on, with huge amounts of  incorrect information.  Again, from all my research and all the posts I've read in various forums over many years, I believe they're the same illness. But I do realize that this is only my opinion, and that, at very best, there's a lot of confusion in this area, both by specialists and by patients. It seems to me, therefore, that using CFS/ME may be a good solution for the name of this horrible illness. 

Your not alone in your thinking jackie

Hi Chloe,

I have read te hummingbird site before, but I disagree  and feel that there are quite a few errors with a lot of the information provided on it.

Sorry if this offends really isn't  meant to, but I am curious to why a lot of people find it so important to make the differentiation, I am interested to know what the benefit of an me diagnosis rather than an me/cfs diagnosis.

That wasn't meant to sound disrespectful but I am very curious xx

No, you are not upsetting me. I found that I too, do not agree with most of the points they were trying to make. I just found the chart interesting in what they listed as differences between the two. More in depth reading on the site brought up the fact that they at the Hummingbird Foundatiion do not believe there is any such disease as CFS. They believe it is only ME. I still think they are two seperate illnesses, but that is my opinion. Not everyone is going to think alike, even the doctors and specialists can't agree. So I think it is healthy for all of us to have our own opinion and in saying that, I believe because each body is different we have to pursue the course that works for us individually. 

Yes, I agree there are many errors in their way of thinking. I just thought that the chart with the differences was interesting. Everyone is entitled to their opinion and I in no way thought it was a very good site. But again there is so much misinformation out there that we who suffer from this illness or illnesses have to wade thru all of it to try to gain any helpful insight. Very frustrating in that the Hummingbird Site was trying to make this a black and white issue and it is far from that. THere are too many variables from person to person. Alot of us have many of the same symtoms but then again in reading this forum many people have some very interesting symtoms that seem very unique or individualized would perhaps be a better term. So in saying that, I will continue to try to gain more insight into what has turned all our lives upside down. Have a great day!

Well said Chloe.

Hi Hannahjade

If you google... Controversies related to chronic fatigue syndrome.... it comes up with a link on Wikipedia. Also highlighted in blue is the name of a uk psychiatrist Simon Wesseley.  These articles may give you some insight

into how the CFS name came about and why!

Hope this helps?!

 

I have read through the hummingbird chart today. From what I can gather it looks as if I have both the illnesses so it is very confusing. feel very ill today so can't writing any more.

Alison

Alison: So sorr ou're feeling ill today. Don't know if you read an earlier post by Chloe, regarding the Hummingbird chart. She saw that, upon further checking into the site, they don't believe that CFS even exists. So I think that it's perhaps not worth your while to give any credence to that chart. Anyway, I think it's an exerice in frustration to try to figure out whether CFS and ME are the same illness or not. I do hope you feel better soon.

Alison: Whoops! Some of my letters dropped out in my post to you, below. "So sorry you're" is what I meant to say. 

Hi Alison

So sorry you are feeling really ill today!

Hope you feel a lot better tomorrow?!

 

Hi Jackie

Hope you are feeling good today?!

If you google.... Controversies Related to Chronic Fatigue Syndrome

it comes up with a Wikipeadia article which goes into quite a bit of

detail and history about CFS and alsoa link to a uk psychiatrist called

Wesseley which goes a long way to explaining the controversey surrounding

me and cfs

I already knew about the situation in the uk but was surprised to find it on

wikipeadia...i would be interested to know what you think of the info on there?

Hey, Sunshine:

I'll check it out when I'm able.

So, Sunshine. I just finished reading the article on Wikipedia. I have to admit, I had a hard time maintaining a calm, collected attitude while reading the piece. And if I could, I'd like to take Wesseley in a room, inject him with a Chronic Fatigue Syndrome serum, and prescribe his own therapy to him: cognitive behavioral therapy and graded exercise. It makes my blood boil to think that his treatment is what's used in the U.K. and sanctioned by the NHS. My take-away from the article is that this is a complex illness that has been mishandled by medical professionals worldwide. Because they haven't been able to understand the cause of the illness, well, it follows (according to their logic) that there must not be a real illness, and that the sufferers of CFS must have a psychological disorder. So first these “professionals” outrage the CFS community by their poorly informed conclusions; then they use the outrage as further proof that CFS patients are emotionally damaged.  I've seen this line of thinking in my own doctors. When I first got CFS, my GP told me to take a vacation. A second doctor I consulted said, "You know, a lot of doctors (in other words, her) don't believe this exists." Then when I cried, out of sheer exasperation and because of her insensitivity, she said "you need to see a psychologist." The article did indicate, of course, that some professionals do believe there is a biological basis for CFS. And I did find one of these doctors, who diagnosed me. But it's alarming how many still question the existence of CFS. As for Elaine Showalter calling CFS a hysterical illness, that’s beyond the pale. Yet I remember reading that viewpoint before I got the illness. People like Showalter look at outbreaks of CFS/ME, like the huge one in Incline Village, Nevada, as hysteria, rather than a true outbreak of a true illness like, say, an outbreak of yellow fever. I think the article reveals that in the medical community, over the years, there has been a tremendous amount of arrogance, indifference, closed-mindedness, and bad science when it comes to this dreadful illness. 

Hi Jackie

It had the same effect on me a few years ago, but it was a different article that I  read but made me sick to my stomach!

So he challenged the WHO about the classification of

Myalgic Encephalomyelitis, and then starts publishing articles that nobody had the inclination to challenge  because they didn't know what he was talking about, as no-one had heard off CFS because he made it up!!!.  Then he make millions running a quango using CBT and GET which doesn't even work! Then give him a knighthood! 

That is why I stepped outside of the NHS and sought treatment because the only treatment sanctioned by the NHS/GMC here in the UK is CBT and GET and antidepressants and painkillers!

And there in lies the answer as to why patients with ME do not want to labelled with the made up term CFS!

 

 

I agree. Wouldn't it be good to be able to inject these ignorant people with chronic fatigue CFS/ ME then they would know what it is like to live with this terrible illness for at least a month

. Even husbands who live with someone who has it as well do not truely understand. I know by my husbands insenseability when he chooses not to understand when it interveres with what he wants to do etc.

Hi Alison

Oh yes...I definitely could think of many people who could benefit

from an injection!!!

Ex husband got to be top of list!!...now he was absolutely and s.o.b!!!

It's been a really tough couple of years going through the divorce but I am

coming out the other side now!

If I have to stay in bed or my pj's all day then there is no-one screaming at me anymore! 

Peace at last!

 

Sorry to hear you are going thru a divorce on top of everything else. This disease does take a toil on families. I hope that once some of the stress is gone from your life you will be on your way to recovery. 

    I am finally getting my energy level back and starting to feel normal again. I have been battling allergies this past week which aggravates my asthma but the CFS has finally taken a back seat to everything else. I am keeping my fingers crossed that nothing else makes me go backwards. I am starting to sleep better again and not waking up feeling so tired like when I went to bed. For me that is a good sign. Hang in there Sunshine, you will get better!!!

Hi ChloeCybil

Thankyou for your realy kind thoughts, very much appreciated!

I left because of his serious domestic violence and abuse!

It was a short marriage!!

I am so glad you are feeling better and that is really good that your sleep pattern is improving?! 

I go to bed really early and don't watch much tv.  I can listen to relaxing music for a short while, but quiet and low light is good for me before I go to sleep.  We have to find what works best as we all experience so many different symptoms in different ways?!

Thanks again for your reply ChloeCybil and I hope you enjoy your weekend

 

Hi, Sunshine:

I'm so sorry that you went through domestic violence on top of ME/CFS. It's so good that you ended your marriage. I say that because a lot of people stay in abusive situations for a long time. I can tell from reading your posts that you are a great person who deserves a lot better.

Yes Jackie you're absolutely right. I think some people have milder to more severe, the condition affects in different ways. Just like fibromyalgia which I've got also affects people to different degree's.