ME/CFS advocates: good or bad?

Sometimes on Twitter whilst browsing profiles you come across people who describes themselves as ME/CFS advocates.

I have become wary of people describing themselves as such as it is as often signpost for pursuing obsessive, unhealthy vendettas & feuds. They want to constantly re-fight the battles of the past with the likes of British psychiatrist Simon Wessely or more recently neurologist Suzanne O' Sullivan (Author of "It's all in your head.")

Chronic illness is full of frustration with limited outlets to rid yourself of them. Most individuals despite al the problems are able to keep a proper sense of perspective. However a few probably do more harm than good.They spend large amounts of time & energy in a self destructive pursuit of the "truth".

Matters are not helped by misquoting facts, figures and statements which the opponents of the biomedical view of ME/CFS gleefully report.

The targets of abuse can also point to harassment and imply the accusers are mentally unstable which is then reported rather than the scientific arguments.

Solution? Support the work of those are doing valuable research and those lobbying the politicians for more funding and if you are feeling angry....step away from the computer.


Hello Sean
I'm not clear how you view the beliefs about what ME is (psychological) by Wesseley and O'Sullivan (as examples) as in the past. Even if that were true their positions as authorities vs any patient gives them more clout than any patient group and their past actions continue to affect beliefs of the average GP and the general population.

I have a question I would like to ask. The implication from what you wrote seems to be that anger is never an appropriate response. I don't know how much you know about ME but I would encourage you to not give up on learning more and on open dialogue. There are people here who have been sick for decades, many decades and there are people who are severely sick who are bedridden and without any proper healthcare support. They have seen how the psychosomatic lobby have continued to push this diagnosis despite there being no evidence to support it and how lives have been shattered with no hope for any proper research that might relieve their suffering.

The psychosomatic lobby can afford to be seen as calm and the voice of reason. They have health, money, prestige, power. Please have a look around and try to understand the anger from the point of view of the level of suffering. Imagine if you are truly severely ill with ME and ME as it turns out is an organic disease and your parents and siblings and children all believed the 'authorities' that said you only needed to adjust your thinking and to push yourself physically to get well. How would you feel then.
No really, how would you feel if that's how your family responded to you in your severe illness. Day after day. . .
I really don't see the need to 'protect' or otherwise side with 'the good guys' who are just trying to help.
They have failed us miserably. And they continue to do so. The wording has changed. And you can even follow it's development because it's all available online. Now the wording is less clear more hedging.
But make no mistake they are protecting their turf despite it's affect on marginalised people who need real research and real treatment.

Most of the money for ME research in the past has gone into CBT/GET. And despite a few brave researchers who have uncovered actual useful indications of organic illness the CBT/GET lobby continues to try and suck up as much of the research dollars for ME as they can. Your portrayal of ME advocates as pictured above is an attempt to put us in an unflattering light and to suggest that we are a little bit crazy.
It's easy to suggest that without taking in the facts.
I think there is room for debate as to what is the "best" way to advocate for any cause. That being said I would be careful about tearing down the advocacy of others. There is room for a variety of approaches, without criticizing others who are doing their best for a cause. I would suggest also taking a critical look at WHERE and WHO critiques of ME advocacy are coming from. And what they gain by dismissing or denigrating certain types of advocacy.
You might find it helpful to look at the history of advocacy in HIV and AIDS. A disease which was horribly stigmatized and ignored, and whose advocates faced many similar challenges in the 80s.
"Perhaps the most fascinating aspects of the history presented in “How to Survive a Plague,” at least in terms of politics and policy, lie in the gradual and incremental progress from outsider confrontation to insider access. (Not to mention all the infighting and name-calling among activists that went along with it.) This case history suggests strongly that you cannot have one without the other; in other words, people like Staley would never have gotten the microphone at FDA hearings, or seats at private meetings in pharmaceutical boardrooms, without being massive pains in the ass first. If they’d all been polite and held up their hands at meetings and voted for Bill Clinton and written letters to the editor like good little small-D democrats, they’d all be dead now. "
Read the rest here:
That's the problem, these aren't the battles of the past. You mention Suzanne O'Sullivan which is a perfect example. The fact that a book like hers was published in 2015 shows that our advocates' work is far from done.

The time to be quiet, polite, and civil was 30-40 years ago. Instead of being taken seriously, we were ignored by governments and trampled over by psychs.
The people on this forum have one thing in common...low energy.

Every military strategist from Sun Tzu onwards will tell you the same thing...choose your battles & conserve resources. Getting over emotional and lashing out at the the wrong people helps nobody and allows patients to be labelled that "mad person".

A little bit of planning, strategy & co-operation is needed.

Finally a bit if charm never hurts...
The people on this forum do have one thing in common...the neuro-immune disease M.E.. Most on this forum also share an interest in working towards effective treatments, biomedical understanding, quality of life, and public understanding for the disease.
I don't see anyone on this thread "getting emotional" or "lashing out". To the contrary, I think there have been some very level-headed and thoughtful responses to what could be characterized as criticism of ME activism. In response you seem to have resorted to ad hominem attacks instead of rebutting the arguments put forth. I think planning, strategy and cooperation are great. All three of those things require a willingness to thoughtfully consider the perspectives of others.
Why are people with ME not allowed to criticize those people who have and are obviously putting up road blocks to patients, especially those in the UK, from receiving appropriate care? Who are you to actually proclaim what our advocates are allowed to focus on?

Who gets to define what a 'proper sense of perspective' is?

People fight for what they believe in. We have many advocates who focus on many different issues. How are these so-called people that don't have a 'proper sense of perspective' doing more harm than good. How much time is too much time? Who gets to define what is 'destructive'?.

Instead of making sweeping generalizations, why don't you give some examples.

I think patients should be able to advocate in the way they see fit according to what is important to them.
the entry by seanko was to provoke a response by asking a question i dont believe he got the answer he was looking for possibly because we have not been on twitter .have any of the respondents seen any balanced or otherwise advocacy on twitter. i personally dont have atwitter account. social media is quite draining.

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