Petition: Opposing MEGA

Ysabelle-S

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I read the Invest in ME statement on the latest OMEGA/MEGA row. I cannot even recall the last time I was surprised by any stunts pulled by the opposition. Disgusted yes, but not surprised. I think the worse the behaviour, the more it highlights how much they stand to lose. The ground is slipping away beneath them, and they are desperately trying to hold on.
 
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Re: Invest in ME statement

As a patient I find both the recent UK research proposals, Fitnet & Mega, to be threatening. I think they are going to cost pwme a lot of time and energy for a return that is zero or less than zero. In fact they are already costing us time and energy.

I lost faith in both the CMRC and MEGA for the simple reason that I could not get a straight answer to a question about the largest bit of UK CFS research, PACE. I think "What use is research if researchers are unable or unwilling to discuss results freely?" I think: "Who are these people who won't show an M.E patient the respect of a reply?"

However, looking at Invest's statement and the overall picture, UK ME charities & researchers appear to me to be building up to a big and wasteful war. I think patients, physicians and M.E research will lose out.

The CMRC should never have started work without the full involvement of Tymes, Invest, M.E patients and others. To do so, unbalanced the project at the very start.

It is not yet too late to correct this fatal flaw. But it soon will be.
 
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trishrhymes

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Re: Invest in ME statement

As a patient I find both the recent UK research proposals, Fitnet & Mega, to be threatening. I think they are going to cost pwme a lot of time and energy for a return that is zero or less than zero. In fact they are already costing us time and energy.

I lost faith in both the CMRC and MEGA for the simple reason that I could not get a straight answer to a question about the largest bit of UK CFS research, PACE. I think "What use is research if researchers are unable or unwilling to discuss results freely?" I think: "Who are these people who won't show an M.E patient the respect of a reply?"

However, looking at Invest's statement and the overall picture, UK ME charities & researchers appear to me to be building up to a big and wasteful war. I think patients, physicians and M.E research will lose out.

The CMRC should never have started work without the full involvement of Tymes, Invest, M.E patients and others. To do so, unbalanced the project at the very start.

It is not yet too late to correct this fatal flaw. But it soon will be.
any suggestions, @batteredoldbook ?

I agree it's wasteful of our limited energy, but I can't see a way forward when AFME and AYME are so closely tied to the biopsychosocial researchers and practitioners and are being used by them, especially Crawley at present, but with Wessely still lurking in the background pulling strings. While they have these 2 organisations willing to be their 'patient representatives' we are stuck.

@charles shepherd for the MEA has been valiantly trying to represent our views within the CMRC and on the media, but he seems to have been shut out of any real involvement - he's not part of MEGA and wasn't forewarned of the big FITNET media blitz or put on the SMC list of experts for media to contact.

I had hoped that when overseas or even local research develops a reliable biomedical test and, hopefully treatment for ME, we would get rid of the BPS crowd for ever.

Now it looks increasing like they are simply re-positioning themselves as 'chronic fatigue' experts so they can keep their BPS empire going.

I guess one suggestion could be for lots of us to join AFME and / or AYME and try to influence them from within.. Personally I haven't the energy.

I think the only way to get a root and branch change of MEGA so it becomes an ME study rather than a fatigue study is to go to the top. For Stephen Holgate to undergo drastic re-education, taking him out of the web spun by Wessely and Crawley and immersing him with the bio-med researchers who were at the recent International Conference. He has had a stellar career in biomedical research into asthma, so he knows what good biomed research is, but he's not an ME expert, and seems to have swallowed the BPS message.

I've given a donation to the MEA Christmas research appeal. That's the only positive thing I can think of that I can do at the moment.

Sorry to be so negative and unhelpful, I need to take my headache back to bed. :ill::bang-head:
 
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snowathlete

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What I find most worrisome about Holgate's contact of IiME Research advisers is that if the content is aimed at convincing the advisers that the charity has got it wrong, as seems to be the case, then it suggests Holgate and the CMRC, rather than listening to patients, are dismissing them.

They asked for patients to endorse their study. Despite not providing a means for patients to voice concerns, they still ended up with a clear message from patients that they do not support it in its current form, and some very well articulated reasons why and what needs to change so that patients feel able to endorse the study, which patients hope they do.

Even if IiME had some influence, the petition in support of MEGA has support from the MEA, AfME, AYME, MERUK (and others?). So clearly it would be logically incorrect to conclude there was undue influence in favor of opposition. The other way round, maybe there is a case for.

What Holgate and the CMRC should be doing is hearing patients and addressing their concerns. If they really see patients as partners, rather than lab rats, then that is clearly the appropriate move.

It reminds me a bit of the Democrats in the recent US election. The populous are sick of the establishment because they ignore their interests and are perceived to be self serving. But instead of addressing the problems and conceding where they didn't want to, the Democrats promote an establishment figure who people don't trust and who represents more of the same. Inevitably, the Democrats lost. What the Democrats should have done is conceded even though they didn't want to, because it was necessary and had they done that they might be in the White House - they might have got what they wanted.

But, as with the CMRC and MEGA in this situation, the Democrats just couldn't bring themselves to do it, because they thought they knew best, who do these voters think they are anyway? It was too painful to give what the voters demanded as that didn't fit their own interests and they thought they could have their cake and eat it.

If the CMRC and MEGA don't heed the views of patients they will not be able to change and if they don't change then they'll find themselves disappointed like the Democrats.

The comparison goes further too as the Democrats can't even blame the Press who supported them, same with the CMRC who have the SMC on board. If you can't even win with a media machine behind you then you have to have a serious think about whether what you are doing is right, or if you should start listening to those who oppose your proposals and giving ground.
 

BurnA

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The CMRC should never have started work without the full involvement of Tymes, Invest, M.E patients and others. To do so, unbalanced the project at the very start.

It is not yet too late to correct this fatal flaw. But it soon will be
The best way to address this is for charities to form an alliance either with the BPS or opposed to the BPS. No blurred lines. The MEA are blurring the picture here.

It is quite simple. Form a biological ME research collaborative, only have members who suppport proper science, and are willing to speak out against the harms of poor science. Why would anyone not want to join this ?

I would like to know how Charles Shepherd feels now in response to the latest fiasco. Is Stephen Holgate still a top guy interested in solving ME ? That's not my impression.
 

Jo Best

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I don't think it's case of correcting flaws in the CMRC, as the evidence suggests (in fact I'd say it is now overwhelming) that the CMRC was set up to enable, promote, further, the interests of the biopsychosocial movement.

I personally had no idea of any of this until I joined in online social networking in 2010 to make social contact (for the first time since I got ME back in 1992) with others in a similar situation to myself (housebound and socially isolated).

When I saw links to the SMILE trial and watched that process unfold, from ethics approval to the media frenzy painting ME patients as dangerous terrorists, it was obvious to me what CMRC was really going to be about, with Stephen Holgate as CMRC Chair and Esther Crawley as Vice-Chair.

Just as now with the MEGA petition, I'd made up my own mind about the CMRC before The 25% M.E. Group, Tymes Trust, and Invest in ME Research made statements about it.

CMRC is really showing its true colours now, and I fail to see how any of the CMRC member charities didn't know this, as together they wrote and/or signed up to the CMRC charter.

There already was a biomedical 'research collaborative' in the form of Invest in ME Research and the biomedical researchers with whom they work in UK and abroad. If CMRC members had genuinely wanted to develop biomedical research in UK they would have supported the IiMER initiative, not attempted to compete or sabotage.

Re. donations btw, there's a matching donation offer currently for Invest in ME Research - https://www.justgiving.com/fundraising/Geoff-MMO
 
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any suggestions, @batteredoldbook ?

I agree it's wasteful of our limited energy, but I can't see a way forward when AFME and AYME are so closely tied to the biopsychosocial researchers and practitioners and are being used by them, especially Crawley at present, but with Wessely still lurking in the background pulling strings. While they have these 2 organisations willing to be their 'patient representatives' we are stuck.

@charles shepherd for the MEA has been valiantly trying to represent our views within the CMRC and on the media, but he seems to have been shut out of any real involvement - he's not part of MEGA and wasn't forewarned of the big FITNET media blitz or put on the SMC list of experts for media to contact.

I had hoped that when overseas or even local research develops a reliable biomedical test and, hopefully treatment for ME, we would get rid of the BPS crowd for ever.

Now it looks increasing like they are simply re-positioning themselves as 'chronic fatigue' experts so they can keep their BPS empire going.

I guess one suggestion could be for lots of us to join AFME and / or AYME and try to influence them from within.. Personally I haven't the energy.

I think the only way to get a root and branch change of MEGA so it becomes an ME study rather than a fatigue study is to go to the top. For Stephen Holgate to undergo drastic re-education, taking him out of the web spun by Wessely and Crawley and immersing him with the bio-med researchers who were at the recent International Conference. He has had a stellar career in biomedical research into asthma, so he knows what good biomed research is, but he's not an ME expert, and seems to have swallowed the BPS message.

I've given a donation to the MEA Christmas research appeal. That's the only positive thing I can think of that I can do at the moment.

Sorry to be so negative and unhelpful, I need to take my headache back to bed. :ill::bang-head:

There have been, not surprisingly, concerns expressed about some of the inaccurate or misleading information relating to the MEGA study that have been appearing on the internet

At the same time, I pointed out to Stephen Holgate that Jonathan Edwards had been making (in my opinion) some very helpful, constructive and critical comments about the MEGA study here on the PR forum - and that these points needed to be addressed and discussed during the planning stage of this research proposal

I therefore suggested to Stephen that he should write to Jonathan

Jonathan provided a detailed and helpful response to this letter

And I know that Stephen has now thanked Jonathan for his input

Whilst I'm sure that people would find it helpful to read this correspondence, it was clearly intended to be a personal communication - so that is about as far as I can go on the correspondence issue

I was in London yesterday for a meeting of the CMRC Board at the MRC - where the MEGA study was obviously discussed in some detail, including the formation of an Advisory Group that will involve the patient community

The minutes for this CMRC meeting, which will contain more information on the timetable for the MEGA bid and development of the study protocol - including patient selection etc, and the formation the MEGA advisory group, will appear in due course

Dr Charles Shepherd
 

AndyPR

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Guiding the lifeboats to safer waters.
I posted on the MEA FB page asking if they supported Holgates recent communication with IiME, all I got was a copy and paste of the above post by Dr Shepherd, this was my reply
Well, thank you for your hard work and for your response but no, I'm afraid it doesn't answer the question as to whether the MEA supports Stephen Holgate contacting the scientific advisor to IiME and expressing concerns about IiME supporting OMEGA. My opinion is that the sooner that the MEA is away from the car crash that is the CMRC & MEGA the better but I'm also aware you think differently.
I also note that apparently only Jonathan Edwards comments were worthy of follow up and, presumably because he has Dr before his name, Holgate deigned to actually talk to him, but that was private Dr talk and us mere mortals aren't worthy of hearing what might have been said. Angry and frustrated doesn't even begin to describe how all the members of the CMRC and MEGA treating us makes me feel.
 

Cinders66

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Re: Invest in ME statement

As a patient I find both the recent UK research proposals, Fitnet & Mega, to be threatening. I think they are going to cost pwme a lot of time and energy for a return that is zero or less than zero. In fact they are already costing us time and energy.

I lost faith in both the CMRC and MEGA for the simple reason that I could not get a straight answer to a question about the largest bit of UK CFS research, PACE. I think "What use is research if researchers are unable or unwilling to discuss results freely?" I think: "Who are these people who won't show an M.E patient the respect of a reply?"

However, looking at Invest's statement and the overall picture, UK ME charities & researchers appear to me to be building up to a big and wasteful war. I think patients, physicians and M.E research will lose out.

The CMRC should never have started work without the full involvement of Tymes, Invest, M.E patients and others. To do so, unbalanced the project at the very start.

It is not yet too late to correct this fatal flaw. But it soon will be.

The CMRC did not get universal charity or patients support because it, from the start, had Crawley as deputy, Peter white was appointed as 1 of the initial 6 I think expert board and it was advertised from outset as being a continuation of the uk broad church approach where fatigue researchers and people more interested in behavioural explanations were there along with supposed ME advocates and biological scientists. I'm not sure staying out was the right thing, joining, assserting and leaving as necessary would have been more effective.
 

Jo Best

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It isn't a war. The conflict is manufactured to divide and conquer. People have been trying to influence from the inside for many years. It doesn't work. The Wessely School has an agenda and they are sticking to it. There are charities that sit around the table together at the Foward-ME group meetings. If some felt they wished to join CMRC along similar lines of working together under a big tent of fatigue-inducing illnesses and illness philosophies/models then fine, but those that chose to spend their time forging their own path of biomedical research should be respected.
 

lilpink

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I also note that apparently only Jonathan Edwards comments were worthy of follow up and, presumably because he has Dr before his name, Holgate deigned to actually talk to him, but that was private Dr talk and us mere mortals aren't worthy of hearing what might have been said. Angry and frustrated doesn't even begin to describe how all the members of the CMRC and MEGA treating us makes me feel.
With knobs on. This puts the MEA in a very, very bad light. Both aggressor and patsy simultaneously imo.
 
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Re: Invest in ME statement
"Who are these people who won't show an M.E patient the respect of a reply?"
Those still determined to show biomedical reasoning for the use of CBT and GET despite the science against it. Those determined not to have their lives turned upside down by their psychosocial gravy train being grounded and their opinions and status destroyed. Those determined the medical profession must never admit it's been wrong for so long, despite the harm such views continue to cause. They can not engage because they have have too much to hide with no arguments supported by scientific truths.
 
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Whilst I'm sure that people would find it helpful to read this correspondence, it was clearly intended to be a personal communication - so that is about as far as I can go on the correspondence issue

I was in London yesterday for a meeting of the CMRC Board at the MRC - where the MEGA study was obviously discussed in some detail, including the formation of an Advisory Group that will involve the patient community

Dr Charles Shepherd
Dear Charles, (@charles shepherd )

I do appreciate your attempt to promote useful dialogue here.

I am not sure that I would agree, however, that the correspondence from Stephen Holgate to myself could reasonably be regarded as 'personal communication'. As Richard Simpson has pointed out, if it was indeed intended to a confidential enquiry between one scientist and another about the motivation for the content of a charity website, directed at an advisor to that charity, I am not sure that there is a legitimate reason for such an enquiry being confidential. It is a matter of wider concern. Moreover, although Dr Holgate did thank me for my reply he provided no response to the issues that I raised. There appeared to be nothing personal about the exchange which was entitled 'Scientific Advisory Board of Invest in ME'.

Concern that I expressed in my comments to Dr Holgate is increased by your note that a recent CMRC meeting discussing MEGA was held at the MRC. If MEGA is a project set up by investigators intending to put in a competitive application for funding then it seems to me a breach of protocol for those investigators to make use of MRC facilities. If MEGA is, on the other hand, a project being commissioned by the MRC or other funding bodies then my understanding is that it is a requirement that such commissioning should be put out to competitive tender, and independently peer reviewed. IiME were not so long ago denied the opportunity to obtain matched funding for a project on the grounds that they did not have a fully transparent competitive tendering system for projects. (As far as I know this has been addressed by IiME since.) I assume that such requirements apply to the MRC or Wellcome.

I am increasingly concerned that MEGA breaches the basic regulations for grant funding in exactly the way that the patient community is concerned about. There may even be legal implications to this. I mentioned to Stephen Holgate that I worried about blurring of distinctions between applicants and funders. I had no response. I am now more concerned.

The enquiry made to me (and I suspect it was only me) by Dr Holgate said nothing about confidentiality and considering the interests of patients expressed here I feel that I am not in a position to keep something confidential when it is has no business to be. I will explore my email records but expect to post the relevant material here in due course.
 
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The relevant correspondence is below:


On 5 Nov 2016, at 13:18, Holgate S.T. <S.Holgate@soton.ac.uk> wrote:

Dear Jonathan,
As you will no doubt know we are trying to put together a national effort to undertake a multi-omics study in CFS/ME. This will involve both adults and children and require about 10,000 patients with controls. I have assembled a great team of researchers including George Davey-Smith, Andrew Morrison, Chris Ponting, the MRC Metabolomics Centre in Birmingham, Somolomics etc. to set about this. I attach a draft of a description of it (although this will need input for from others yet and the FAQs).
As you will see below, for reasons that baffle us there is an internet campaign (a petition, I believe - OMEGA https://spoonseeker.com/2016/11/02/why-we-all-need-to-sign-the-omega-petition/ and http://www.investinme.org/IIME-Newslet-1609-02.htm/) to try and stop us from doing this. I am perplexed in particular by the statement on the Invest in M.E. website "MEGA will...suck away all funding for ME research for the next few years and give an impression that something is being done that will produce benefits for people with ME". We have not even written the protocol yet, let alone seek funding. It seems that Invest in ME is involved in this, though I don't know why. I should add that MEGA nor the CMRC has any connection with PACE or Peter White now he has retired. As you will see from the attached brief description we will be establishing a patient's panel to help us and to have patients and their carers involved throughout.
In your capacity as an advisor to Invest in ME, could you please shed some light on this? We would be pleased to involve Invest in M.E. in the initiative if seen as helpful. I am copying this email to Charles Shepherd of the M.E Association and Sonya Choudhury of Action for M.E. as well as Mark Edwards, and Hugh Perry and Neha Issar-Brown from MRC some of our advisors who have been helping us.
Thank you very much,
I look forward to hearing from you.
Kindest Regards,
Stephen.


Dear Stephen,

Further to the previous email, I am now able to give you my thoughts on the MEGA proposal.

I have advised IiME on research strategy but I am not involved in decision-making. Views expressed by IiME are not my views, although they may overlap. So my comments below are based on my own perspective on the recent debate and a desire to facilitate good research into CFS/ME.

My understanding is that the MEGA grouping was formed in order to facilitate an application for funding by certain investigators, not so far clearly identified, for a large-scale genetic/metabolic project. That project will obviously need to be submitted in the normal competitive way and be judged on its merits by peer review.

I appreciate that individuals like you and I may have a facilitatory role in getting investigators to collaborate. However, I do see problems when distinctions between potential grant applicants, potential commissioners of grants and representatives of potential funding bodies get blurred. Serious problems have arisen in this context with Arthritis Research UK and appear endemic to EU collaborations. In theory everyone can join a consortium or collaborative but in practice funding goes to specific individuals and that tends to be determined by internal politics rather than open competition. That is a matter of concern not just to scientists but also to patients and carers who may benefit from open competition in funding strategy.

The current spate of comments about the MEGA proposal appears to have been precipitated by the MEGA team itself. A petition was put on the internet asking for patient support, presumably so that evidence of support could be used to strengthen an application for funding. However, patients and carers (and also independent scientists such as myself) are concerned both by the fact that, as you say, no protocol for the project has yet been written, and by the way the petition only asks for a positive response. In the context of the normal peer review process, gathering support in this way would not be acceptable. Within the patient and carer community there are a number of highly intelligent individuals, many of whom understand the relevant scientific and methodological problems in great detail. I think it is reasonable for them to feel unhappy about a ‘consultation’ process that does not take them seriously.

As a result a counter-petition has appeared, which I believe has received about the same number of signatures as the original. I think the MEGA team needs to reflect on why that should be and appreciate that it should have come as no surprise. If IiME have made comments I suspect they were triggered in the same way. The point that any MEGA project will use up funds that are potentially available to any applicant does not seem to me unreasonable. A comprehensive study based on samples from a large cohort is clearly a good idea, but money is unlikely to be available for multiple studies. A Biobank project is already in existence, which is designed to re-invest money from initial project funding into rolling expansion but there is no mention of it or the researchers involved in the MEGA postings. That seems on the face of it a waste of common resources.

There may be a perception within the CMRC that it is the obvious source of an application of this sort. However, most of my contacts are with the international research community (through IiME, EMERG, EUROMENE and IACFS/ME) where at least some would view CMRC (along with NIH) as parochial and out of step. The main problem for CMRC is clearly the association with trials of psychological therapies using poor methodology. Peter White and Simon Wessely have put it about that criticism of these trials is malicious. I think it was useful to have the independent opinion of the Information Officer at the QMUL FOI appeal in April to the effect that this suggestion is at best a red herring and at worst deliberate misinformation. The trials do have poor methodology and do not provide reliable evidence; the patients and carers are right to point this out.

What I think is particularly relevant in the present context is that the claims that criticism is unreasonable reveals a refusal to acknowledge, on the part of trial authors and colleagues, that they understand the nature of the methodological flaws involved. Anyone can make mistakes in science: we have all designed poor experiments. Competent scientists are, however, expected to be able to understand in retrospect why they are poor. As a grant referee, I would seriously doubt the suitability of applicants who claim to be unable to understand basic methodological flaws.

You have made it clear that Peter White is no longer involved MEGA. What is not clear is Esther Crawley’s position, but various comments suggest that she may be heavily involved in cohort selection. Esther was a registrar with us. She is intelligent and motivated. However, judging by what she has recently communicated to the media and to other investigators, and also by some of her recent publications, it is unclear that she recognises the flaws in studies of CBT and related therapies. To be credible within the scientific community I think she needs to demonstrate that she fully understands the poor quality of most of the work in the area.

To be specific, we do not want to see a project set up that, like PACE, appears superficially to be well designed, with large numbers, randomisation etc., yet suffers from one or more basic flaws that can introduce systematic bias of a sort that destroys the project. CFS/ME is, as you well know, more or less the worst case scenario for risk of systematic bias in terms of cohort selection, outcome assessment and so on. Reading the recent review by Esther and George Davey-Smith I was not convinced of an adequate appreciation of just how serious the problems are. I spent my career piecing together causal factors in rheumatoid arthritis, and, even there, things were not straightforward. The simplistic model of genes and environmental triggers is inadequate.

I have made some comments about the MEGA proposal elsewhere, on the basis of the information that has been put out. I am happy to discuss these further but will not enlarge here. The issue that worries me most is that of cohort identification. I understand that it has been suggested that patients should be recruited from CFS/ME clinics. My experience with specialist colleagues who diagnose CFS/ME is that diagnosis is often heavily coloured by (varying) irrational personal views about the nature of the illness. Moreover, clinics are unlikely to reflect the true demographics without systematic bias that might involve both genetics and comorbidities. In RA the Norfolk Arthritis Register used a directly population-based cohort.

My position within the CFS/ME research community is as an invited outsider with no personal interest in funding or publication. As such, like you, my motivation is purely to encourage the best science. I think the MEGA proposal has to be a welcome one in principle. But it has to compete on a level playing field, through appropriate channels, and be judged on the merits of a detailed proposal. Continuing concerns about the quality of science from the patient and carer community are in my view legitimate and constructive. Both scientific and patient communities are entitled to have evidence that methodology is robust and presentation transparent. Even with that evidence there may still be some who for historical reasons remain sceptical but there is no reason why that should be a barrier to application for funding.

To put things in a nutshell, the way to ‘End the damaging battle over chronic fatigue syndrome’ to quote Esther’s New Scientist article, is for Esther, and the CMRC as a whole, to put out a clear statement that the shortcomings of past (and perhaps ongoing) studies of psychological and exercise therapies are understood and taken on board in future plans. Regardless of whether or not we think regular talking sessions and exercise management may well be helpful in the path to recovery, if we are to set a standard for CFS/ME research then we need to acknowledge that the evidence from trials from the PACE team and colleagues in the Netherlands is not reliable enough to be useful. The transition to good science we are all striving for needs to be complete and uncompromising - and seen to be so.

Very best wishes,

Jo

Dear Jo,
It was most kind of you to provide me with such a helpful response to my enquiry, thank you.
Kind Regards,
Stephen.