Dare to hope... what amazingly great thing might happen in S4ME's first year?

Esther12

Esther12

Senior Member (Voting Rights)
Nope, you don't get to hope for a universal cure... lets keep it plausible people!

As someone with a mild PACE obsession, I spend much more time hoping that junk-science gets picked apart rather than that good science will lead to real progress anyway.

I dare to hope that we will see the CFS/PACE story keep growing and growing, becoming a mainstream embarrassment for the UK science Establishment, and for significant chunks of the UK science media (although the fact the failings of the science media is a part of the story does make coverage rather more difficult). I want it more widely discussed than Wakefield/MMR!

This is an important story, so bringing it to light would be good not just for us, but for all sorts of patients, for science, and just for people generally. That things were allowed to get so bad is a reflection of some really worrying and widespread problems that needed to be challenged.

It was fun to be part of a few of the discussions which have helped spread some awareness of #PACEgate... but also, I'd quite like those discussions to come to a conclusion at some point soon-ish!
 
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Yes, by challenging psycho-BS, we help many, not just ourselves. I would like to see:

1. An increase in the number of doctors who hesitate before suggesting some difficult symptom must be 'psychological'.

2. An increase in scepticism about "power of mind over body" claims in general

3. Increasing marginalisation of those who make unfalsifiable claims about psyche and illness (I'd like to see these be treated as 'alternative medicine', which is what they technically are)

4. Tightening of standards for behavioural and psychological clinical trials

5. And of course, greater recognition of the seriousness of ME.
 
Unrest seems to be raising the profile of this condition, that will hopefully continue to rise

Research funding will hopefully continue to increase

People will pay less attention and respect for CBT/GET

Results from the new Rituximab study

A possible disease mechanism?
 
I think what we can look forward to is more people in position of authority feeling safe to speak up about ME/CFS or questioning the idea of psychogenic illness. Social change in other words. The MUS/PACE forces seem to be disorganized and ineffective at the moment after being dealt such a heavy blow by successful PACE criticism, and now again by Unrest.

This might be incremental steady change rather than some singular amazingly great event but it's still nice.

The RituxME trial could be a major turning point, and several other lines of research could also produce a breakthrough but it's hard to predict when it will happen.
 
I would hope to see

  • NICE remove GET from the guidelines before the formal review
  • ME/CFS removed from MUS in the UK
  • The science media centre discredited in the media and called out for the sham it is
  • those that squandered public funds via the PACE trial called out for the frauds they are
  • Positive results from the ritixumab trial leading to more biologically based UK research into the disease and a subsequent drop off in funding for psychiatrists
 
I hope to see the relevant BPS "researchers" face professional consequences for their active campaign against ME patients. They've said some awful things about us, and implied a lot more, and I'd like to see them held accountable, preferably unable to get a job at any reputable institution, and denied funding for their quackery at every turn.
 
Valentijn said:
I hope to see the relevant BPS "researchers" face professional consequences for their active campaign against ME patients. They've said some awful things about us, and implied a lot more, and I'd like to see them held accountable, preferably unable to get a job at any reputable institution, and denied funding for their quackery at every turn.
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Wow, now's there's a pipe dream!
 
I'd like to see:

the Rituximab trial published with clear positive outcomes

A cheap, readily available biomedical test developed that shows up as clearly positive for everyone who has ME with PEM and not for anyone else, so we can be clearly distinguished from general fatigue.

More drug trials of drugs using preexisting drugs that can be easily re-purposed for ME.

Public worldwide recognition in the media and medical world that we have been gaslighted, maligned, ignored and harmed by the medical profession.

All directive psychological 'treatments' and exercise based 'treatments' banned and the main proponents sacked and more junior practitioners re-trained.

This last paragraph to apply to all MUS 'services' not just ME.

ME services led instead by consultants with up to date knowledge and willingness to act as detectives in differential diagnosis of confusing cases.
 
Not ME specific but the complete overhaul of all background rules/guidelines/practices with regards to welfare assessment and payments to be fair and honest, as understood by normal people.

The research into introducing avian characteristics into the porcine group to be better funded.
 
as science in m.e. becomes popular, there will need to be places where scientists, including graduate students, can informally talk about m.e. biomedicine and bounce ideas off us. maybe this forum will be inviting to those who want to learn deeply.

i doubt the sum total of our relevant hxes/comorbidities, historical knowledge, and insights is captured in the published literature. [understatement.]

dunno if this fits the forum's objectives, but it might be something to think about.
 
Samuel said:
dunno if this fits the forum's objectives, but it might be something to think about.
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Yeah, I guess I hadn't focussed so much on what I hoped from the forum.

re S4ME: I'd like it become a place where patients and researchers could come to test their ideas against people happy to be critical and pick apart the views of others as robustly as they can. I know I've learnt a lot from discussions with other patients, so would like to continuing that learning, keep drawing new people in, keep trying to raise the standard for patients' discussions and advocacy... until we eventually take over the world!
 
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Valentijn said:
I hope to see the relevant BPS "researchers" face professional consequences for their active campaign against ME patients. They've said some awful things about us, and implied a lot more, and I'd like to see them held accountable, preferably unable to get a job at any reputable institution, and denied funding for their quackery at every turn.
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+1
In some cases i would like to see criminal charges, in others medical licenses revoked at the very least
 
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