I personally think that's pretty fair. Almost every scientist would tell you that people without the necessary training and experience usually have very great overconfidence in their scientific skills and analytical ability, and when you have too many citizen scientists coming in with their own opinions and takes things can turn into a mess.
My experience is that having a university degree has caused a great many researchers and clinicians to grossly overestimate their scientific skills and analytical ability. Those are skills which have to be actively learned, yet they are not learning them, at least in some degrees (psychology seems especially remiss). It's a huge problem which is resulting in a shocking amount of research that is completely useless.
We are not coming in with "opinions". We are coming in with evaluations of the research, based on scientific principles which are at least nominally universal. To say that our contributions are lesser or problematic due to our lack of status is a logical fallacy: Appeal to Authority. If a patient is getting stuff wrong, other people (including patients) can point that out and discuss it. Ideas are not superior based on their source, and must be evaluated on their own merits.
There are now so many bona fide researchers that represent ME/CFS patients, that I don't have a problem as long as the data can make its way into their hands.
The data isn't making its way into their hands. As you'll notice in the anti-patient message you approve of, they are prioritizing access to people they work with. Since an email is as easily sent to 2 people as to 1, what they are really proposing is selective withholding of data from other researchers, especially those who they do not work with. Not-so-coincidentally, those are also the researchers who would be willing to point out flaws with the original interpretation of data.
The greatest concern is whether they allow other researchers like Carolyn Wilshire, Jonathan Edwards, Ron Davis, Jose Montoya, Ian Lipkin, etc. to access the data.
Is this your own special "bona fide" list? Because other researchers at universities have asked for data and been denied it. And perhaps we can directly ask
@Carolyn Wilshire and
@Jonathan Edwards what they think about limiting the access of that data to people like themselves.
If possible it's better for properly trained researchers familiar with the research community to lead the way.
That approach resulted in diddly-squat happening for decades. It was patients' refusal to be inflicted with bad science which changed the situation. This was spear-headed by patients with no formal education such as Tom Kindlon and Alem Mathees. "Properly trained researchers" are involved now because our involvement paved the way for them. Why should we abandon an approach which is very effective in favor of an approach which was a complete failure?
(You'd find that, although we can think citizen scientists are great, very few in the research community take them seriously.)
If a "researcher" judges content solely based on who produced it, who gives a damn what they think? They're obviously third-rate hacks who can only form a good opinion of themselves if they place all of their stock in their credentials. The amazing researchers working with the ME community have repeatedly said how impressed and inspired they are by what patients have managed to accomplish in the scientific realm

Those are the ones whose opinions I care about.
The problem with PACE was different, which was that they weren't releasing the data to anyone at all.
They were releasing PACE data - to people they work with, and no one else. Their approach to PACE data is exactly what they want to apply to all of their data. Fortunately the courts and the vast majority of the scientific community are now adamantly opposed to hiding data, especially when it's publicly funded.
That came from activism and influencing researchers to do the right thing, not our scientific skills. And that's irrelevant now, because we've got lots of researchers that can represent us.
And there's plenty of men out there ready to mansplain for us, so us little ladies can retire to the kitchen to make them dinner while they look after our civil rights for us like we asked them to
Even if we could completely depend upon other people to represent us, why should we? Those researchers and academics speak for themselves in the realm of science, though it usually is very helpful to us, but we should also be permitted to speak for ourselves. We have different brains, different thoughts, and different valid points to make.
In summary, I think you're missing two very major points:
The first is that science is not a private club. In fact, it's the opposite. It's used to make research accessible, understandable, and reproducible. It does not require a degree to develop a thorough comprehension of scientific methodology, not does having a degree guarantee such a comprehension. This is especially the case among doctors, who have a professional degree, not a scientific degree. People are not going to comprehend good research practices unless they deliberately learn about them - and everyone has the access to learn about them.
The second point is that there is no excuse for hiding data. The alarmist claims from the PACE crew and their buddies are soundly rejected by the rest of the scientific community, as well as the judiciary. No one can be identified from anonymized data, and any poor or inappropriate interpretations of the data will be corrected by other patients or academics.