Forward-ME Group Minutes – 17th July 2018

http://www.meresearch.org.uk/news/forward-me-group-minutes-17th-july-2018/

 

@dave30th , I assume you would have been told this but just in case.

 

I was surprised to see this from ME Research UK as I thought @Action for M.E. did the minutes? Doesn't really matter who does them, they should be provided a LOT quicker than they are at present. Most of what's in them is old and past it now. Why even bother if they can't be put out in a timely manner?

 

If Forward ME is going to respond to the NICE guidelines does this mean that its constituent members will not be doing so. What would be the point of responding separately if an agreed position has been reached? How would any discrepancies be construed? Would a single submission from Forward ME carry more, or less, weight than individual responses. (I am not really naïve. I fully expect all to have their say. I just do not understand the nature of the Forward ME organisation)

It almost looks as though there is to be an attempt to rehabilitate the SMC. I endorse the above comment. Why?

It is strange to see that according to its website the only letter sent or received by Forward ME in the last year is one which no organisation concerned with normal proprieties would have published. This may seem to be a distortion of priorities and call judgment into question. This seems to be an organisation with no concerns as to how it might be viewed, which is a shame.

 

Interesting:

The Chairman announced she had attended a meeting the previous week [of the CMRC] and had found it very interesting. Dr Charles Shepherd said that the current focus was on encouraging some body to produce something along the lines of the IOM report. Prof Stephen Holgate had been having discussions with the Academy of Medical Science but they seemed reluctant to take it on.​

 

The minutes have only just been posted on the FORward ME website.

 

Exactly. You are quick off the mark @Andy. I have been checking for these regularly. I don’t understand why it took so long to produce them.
I also notice that there were a lot of ‘apologies’. I wonder how much notice was given.
The date of the previous meeting was also inaccurate. It was 1st May, not the date given.
Have not yet had time to read these minutes but I will be doing this.
I was glad to see that Dr Nina Muirhead was there.

ETA: crossed with last post.

 

I just happened to be on Facebook when ME Research shared the link.

 

Presumably that's the BMJ?

That's interesting. Presumably that's a reference to the Wearden on-line course that a government minister had just been praising? Agreeing it's awful, but then wanting to keep it in place for 2+ years doesn't sound great.

 

Forward ME was a group which was set up, in no small way, to cut out the 'hoi polloi' attending the APPGs at the time (I was one of the 'proles' turning up to those APPGs back then). Mar, despite her glowing credentials in the field of ME advocacy, does have a tendency to attempt to have her own way and will resort to odd measures to achieve that. One incident that I will cite (roughly a decade ago) was when my campaigning colleague (whom I attended an APPG with) was taken away by police as he was entering a lift (he's disabled) and was questioned for a few minutes.

It transpired that Mar had made complaint.
He was released without any warning or charge.

Personally I treat Mar and Forward with a little caution.

 

Minutes of the 1 May 2018 Forward ME meeting say:

Matters arising

1. Science Media Centre (item 3, minutes of 28 Marchmeeting). The Chairman announced she had received no response to her letter to their Chief Executive. She requested the help of members in the form of anything we get to know about the SMC. The SMC had made denigrating comments about ME and the ME charities in the past. It was a rule of the Charity Commission that one charity must not malign another. She would bring such comments to the attention of the Charity Commission.
2. Dr Charles Shepherd pointed out that there was a slight problem in that the SMC had made very little comment of their own about ME/CFS. What they had done was to show bias in the scientific papers they had chosen to flag up –in other words only papers that emphasised the psychosocial cause of ME and portrayed the ME charities in a poor light. In response to a question by Jane Colby, Charles agreed that they had referred to allegations of harassment of certain doctors.

​

And the minutes of the 17 July meeting that we're talking about say:

Minutes of the meeting of 18 May – matters arising

1. [...]
2. Science Media Centre (item 5.1 of last meeting). The Chairman said she had given up on them. Dr Charles Shepherd asked whether it might be worth inviting Fiona Fox to meet us. The Chairman said she would try.

​

I assume there's a typo on that May date somewhere. But it seems as though Forward ME want to get in touch with Fiona Fox to hold SMC's feet to the fire, not to rehabilitate them or collaborate with them.

 

I think Forward-ME's response is informed by members, but I think it ultimately represents the Countess of Mar's executive decision over those discussions. Charities would still submit their own responses because they a) present an opportunity for nuance or divergence from the 'party line'; and b) because more responses in rough alignment are more powerful than just one.

 

@chrisb

Nor do I.
I just have a very uncomfortable feeling.
I have admired the Countess of Mar for several years but it doesn’t feel quite the same and not in a good way. Perhaps better expressed below.

I agree with the above.

 

I think that I was considering the likely effect rather than the intent. This seems like preparation to refight the last war. What exactly is the strategy? The SMC seems to have been temporarily silenced by the battalions DT has brought to the field.

A major problem with these minutes is the absence of any discussion of the "international alliance" of which, at the previous meeting, it had been agreed that they should become members. How can an organisation which wishes to be taken seriously first make clear to the world in general, in as damaging a way as possible, that it will no longer seek advice from a former advisor on the subject, then agree to join an international alliance dealing with complex issues, and then have no further discussion on the matter at its next meeting-having apparently held no discussion at the meeting preceding the decision?

 

Nothing about the David nutt xyrem drug trial whose funding according to this ended https://mrc.ukri.org/documents/xls-...fsme-research-projects-from-200405-to-201617/
2015 but I saw no presentations or paper from. I thought C o M was looking into this

 

There was no AfME rep there so that may have contributed to the delay with this set of minutes.

 

I am always amazed at how few of the different charities attend the meetings. There is always a long list of apologies. Obviously not a priority for a lot of people. Charles Shepherd nearly always attends however. Not sure that M E has gone forward a lot in spite of their efforts.

 

Unless Forward can find some sort of propaganda advantage to attempting to meet the SMC (being diplomatic, making them look unreasonable and biased) I wouldn't touch them with a 20ft medicated barge pole belonging to someone else.

The SMC have an agenda (to use the cliche) so there's no chance they'll change. If you're going to 'negotiate' with them, anyone will have to be a lot smarter and be acutely aware of how this looks to anyone looking in - playing to the gallery, a wider public.

Other than that the whole idea of trying to arrange a meeting with the SMC appears to be barkingly naive.