What's the attitude of Gulf War vets toward ME/CFS?

[Ren]

I'm afraid I came into the game too late to know of advocate Tom Hennessy before his passing. Sometime recently, however, I read some things from him / about him on PR, and I recall that he had said that he had tried to unite, to some degree, the Gulf-War community and the ME/CFS community, but the Gulf-War vets wanted nothing to do with the ME/CFS community. I don't know how long ago this was. But does anyone know, if this is still true?

What's the attitude of Gulf War vets toward ME/CFS? (Since Klimas - and others? - fight for both groups, surely some within that community respect ME/CFS?)

Thanks!

 

[biophile]

Gulf War veterans with GWI have to put up with their physical symptoms being attributed to PTSD, which can also be a serious condition, but one which some veterans do not think can explain their illness. Furthermore, the CFS construct is used to dismiss claims that GWI is a distinct condition from CFS and other so-called medically unexplained conditions. Many patients who identify with the "ME" disease entity hate "CFS" for similar reasons.

I am not a veteran, but I can imagine that people who are said to have become ill after fighting in a war with suspected exposures to toxins and/or questionable vaccines, would want very little to do with a group of civilian patients commonly perceived in society (and to possibly themselves too) as over-stressed pansies.

These issues also make me wonder how many of Wessely's critics are actually Gulf War veterans who hold him responsible for contributing to the denial of GWI as a distinct condition and for pushing the CFS construct onto them instead?

 

[justinreilly]

You may well be right, biophile, it makes sense to me. But I think we need to try to make alliances if possible. i contacted Anthony Hardie, a GWI vet, but haven't heard back.

 

[SickOfSickness]

I agree with biophile.

They would not want to be called people with "chronic fatigue". I don't want to be called a CFS patient either.

I saw a list of illnesses on a social support network, and was surprised that GWI was a separate entry to ME/CFS, because I thought it was accepted they are very similar or the same. But I can imagine they must get mad if they see them lumped together as CFS/GWI.

Some doctors are clueless about ME/CFS and if the patient has unexplained fatigue and a few labs come back normal, they slap the CFS label on. The patient may have fatigue but in this case the doctor doesn't know there are ICC and CCC and other definitions of ME/CFS. So some patients are being diagnosed without having the myriad of symptoms most of us have.

 

[Hip]

What's the attitude of Gulf War vets toward ME/CFS?

A related question is what's the attitude of ME/CFS patients to Gulf War illness?

When the Institute of Medicine (IOM) recently redefined GWI in a way which made GWI look more like a psychological condition, and less of a physically caused condition (which is a hand waving trick, likely done as a ploy to avoid insurance payout), there was little response from the ME/CFS community — until the IOM stated their plans to do the same thing to ME/CFS, and then we suddenly got involved.

So it would be good for both sides to have forged links, and become allies fighting against such bad treatment.

However, I think ME/CFS patients likely have more knowledge of GWI than the veterans have of ME/CFS, since ME/CFS patients seem to be a curious bunch, often showing interest in related conditions like autism, fibromyalgia, celiac, Lyme, etc.

I am not a veteran, but I can imagine that people who are said to have become ill after fighting in a war with suspected exposures to toxins and/or questionable vaccines, would want very little to do with a group of civilian patients commonly perceived in society (and to possibly themselves too) as over-stressed pansies.

I love that analysis! It made me laugh. But I can see that as being very likely what Gulf War illness patients would think.