13th Invest in ME Research International ME Conference - 1st June 2018

Ah sorry! I did not know this. Thanks for clearing it up ! Fukuda, ICC and CCC are though right?

Also, bonus question. What about the original ME diagnosis by Ramsay? That was not a diagnosis of exclusion, right? Or was it ?

 

I've only been diagnosed medically with SEID ME/CFS, so I'm not 100% sure about the others. But a patient can be diagnosed with SEID even if they have other fatiguing conditions.

 

I queried mito disease with paediatrician. I got a very weird look and was told that it only applied to very all children (!)

 

Sorry - very small children!

 

This was basically the response I had from a doctor when I brought it up, awareness seems limited to very significant congenital disorders.

The doctor told me they weren't aware of anyone in the UK that investigated mito disease in adults. By chance I was later referred to a neuromuscular disease clinic to exclude Myasthenia Gravis, I casually said I had wondered about Mito disease but repeated what the other doctor had said. I was quickly put in my place, apparently we have a world-leading Mito disease lab! Makes me despair...

 

It's my experience with the NHS that nobody knows what specialist stuff exists, even in the same town or city. You'd think they'd have some sort of directory, but apparently, they don't.

 

spotted these posted at the other place:

can anyone tell us what this is all about?

eta: I got them directly from IiMEs FB page

 

How ironic would it be if, having fought for years against the stranglehold that the BPSers had on all aspects of ME in the UK, IiME failed to recognise the fact that, in essence, they had 'won' and continued their fight, only this time against the new status quo?

(No, I don't think the fight has been 'won' yet but I think that some important battles have been won that allows us to advance forward. I'm just concerned that IiME, being so focused on their individual path, don't see that.)

 

I think we should wait and see before being critical of Iime. We do not know what it was that they witnessed, or who was involved.

There certainly seems to have been some presumptuous behaviour and a lack of good manners, which no doubt contributed to the impression formed.

 

I think this is fair comment.

I wish I could enlighten Trish but I am not in a position to do so beyond saying that there is nothing very new here. Things are changing for the better, more despite the political manoeuvring than because of it. It is a pity if people feel aggrieved and feel the need to cast doubt on others' motives where it is inappropriate.

 

I think IiME will be in a good position to know when the battle is won but it's a good idea to ask ourselves how we will know.

From my position this springs to mind (but sure to be more)

1. The current science around ME is taught in medical school and older doctors are re-educated
2. We have one common diagnostic criteria agreed
3. Patients have access to a NHS doctor who accepts it as a physical illness and tries to treat symptoms on the same footing as other diseases
4. Research is carried out on well defined populations and is funded at the level of and with the urgency patients deserve
5. Doctors want to specialise in ME and to carry out research on it
6. Medical journals will publish research without a drama and of good quality
7. The SMC has doctors knowledgeable about the disease and accepting that it is physical on their spokesperson list
8. Patients can get medical treatment at home if housebound
9. Patients can get the level of state benefits or insurance payouts that they are entitled to
10. Patients can attend NHS hospitals without being automatically labeled as malingering or mentally ill
11. Quack treatments get a critical appraisal in the press and by medics
12. Doctors who mistreat ME patients stop getting honoured and given awards
13. UK bodies of doctors stop lobbying to have WHO codes changed to psych ones
14. The MUS and Functional syndromes as an idea (and all the new incarnations of these) die out
15. The NICE guidelines are changed to something evidence based and reflecting current knowledge

I think we have got a long way to go before any of this happens sadly.

 

I have a fair idea as I've been following events since 2010 when IiME(R) published their proposal to establish a Centre of Excellence for ME. The comments you quoted here follow from their comments on their link to their webpage for the Centre of Excellence, which gives some context.

I also loosely followed events around the forming of the CMRC in 2013, their initially failed bid for mainstream funding for their MEGA project and the recent regrouping, so that joins a few more dots. I've never been to their conference, but this is a comment by someone who was there.

"As a bit of an interloper and someone who doesn’t live in the UK, I saw these unholy alliances playing out over the two days. Not a pleasant sight. However what it did do for me was strengthen my resolve to support the work of IiME even more so. IiME have been the only players that have consistently stood by ME patients, never flinching from the truth, never selling out their supporters, always willing to put their head above the parapet, doing incredible work at bringing the international research community together and all the while keeping their eyes focused on getting the best possible biological research for pwme. Please continue to plough your own furrow."

 

It does read to be a bit underhanded though - are you sure the doubt is inappropriate?

If what is implied is true, I can understand where iimer are coming from.

Sounds like some people piggy backed iimerc having previously ignored them, and now plan to steal a bit of thunder.

I guess we'll have to wait to hear more, but in the absence of more information I would remain suspicious.

 

At some point, advocacy must shift from destruction and opposition to construction and collaboration.

 

Certainly for the people that matter in terms of having a chance of doing something useful for ME, I think IiME's comments are out of order. If the political landscape is moving on and a number of researchers are in London then it makes sense and is right for PWME for researchers to talk collaboration in whatever way they want. There is a debt of gratitude to IiME for bringing people together and paying their expenses but that does not tie anyone to any loyalties that override setting up the most appropriate collaborations. It is exactly what we want to avoid and what IiME have themselves been complaining about. If IiME are entitled to select who comes to their meeting then others are entitled to select who comes to a dinner.

There has been something strange about this IiME meeting. It is odd that the one PhD student they have part-funded who has published data was not invited to attend and present at the young investigator meeting, as far as I can see. Other groups seem to have not received invitations because of connections to third parties of no fault of their own.

Nobody is stealing anything from IiME because IiME do not own anybody - nobody does in science. I have in the past respected IiME's firm position on not mixing with poor science but this time I think they have got things wrong and risk causing unnecessary strife.

 

@Jonathan Edwards you say that a particular student wasn't invited by IiMER to their event "as far as I can see". I'm certain that is not the case. I don't know which groups seem to you "to have not received invitations because of connections to third parties of no fault of their own", but perhaps that's not a correct assumption either. I'm sure you could easily check the facts with IiMER, otherwise you're casting doubt on their actions and motivations, which is what you seem to be worried that they are doing, so that doesn't seem to me to make sense.

 

I have facts at my disposal that I would prefer not to have to air here. I don't want to name names of people who have been treated badly in my judgment.

 

It's a pity that you prefer instead to add fuel to the fire by making such comments.