I went to see them about seven years ago. ...and my advice would be No.....although the nutritional advice was quite good
The 'psychology' side is a mixture of NLP, CBT and EFT (which is where you tap your head in various places whilst repeating a phrase) I found the EFT strangely pleasant. Remember that you can have some CBT for free on the NHS. ....so you need not PAY to be told that you are imagining your illness
I would not spend money on it now and feel slightly foolish for having done so...
The newsletter is in 2 parts. The first one has 'The Parliamentary Review 2015-2015' then the bit about the 10 organisations etc. Three pages about the OHC and ME,lack of research etc. A colour PIC of the chairman David Butcher. A section called 'The need for an innovative approach to treating ME/CFS'. 'Gp awareness is generally very low , misdiagnosis, ...NICE guidelines recommend CBT get, only moderately effective in most patients....' Another section 'How the OHC helps'.....'applying a unique combination of nutritional therapy,functional medicine, conventional medicine and psychology'.......personal experience of staff.
Another section 'the OHC is a community'. Back page 'There is a clear unmet need for an innovative effective and safe approach to the treatment of ME/CFS patients'
'The OHCs broader objectives': 'the OHC does not just want to persuade the NHS to offer its integrative medicine approach to all ME/CFS sufferers, it wants to:
Work with other charities to secure funding for research into the physiological causes of the condition
Improve its own approach..
Undertake research into the application of integrative medicine treatments to other complex,chronic illnesses'
Another section OHCs mission.....making treatment at the OHC freely available
Another section 'our controlled clinical trial'., quotes the BMJ 2012 preliminary study.
The other pages are related to donating towards the cost of the new proposed trial (£275000).
Sorry, got fed up of one finger typing on the tablet. I should have said the letter arrived thro the post not email.
They are offering some 'great perks' tho for supporting them. You can get:
The Power of Breathing:mp3 download or cd.
Secrets to recovery
and my favourite:
Ultimate Therapist Training
But no cuddly toy.
This week we are particularly excited to be letting you know that Alex Howard's online coaching programme Conscious Transformation is running again starting on Monday 4th July. This is a unique opportunity to work in a small group directly with Alex from the comfort of your own home.
@sarah darwins@worldbackwards@slysaint I've done some stuff through OHC when I was bedbound level after a relapse. At that point I was too ill to read to find information for myself. In that context I think it was useful (as in if you are well enough to read yourself you may be able to make the improvement without it).
I did the nutritional side of it which did get me from bedbound to housebound level within 2 weeks after no improvement in 3 months (despite already eating organic seemingly healthy food). I'm not sure what was the key to that. I started several supplements but it may even have been as simple as the nutritionist noticing that I didn't eat any salt (I had undiagnosed POTS which she didn't pick up though).
The Secrets to Recovery videos were also helpful to me at the time. Their psychology approach isn't the same as the psych lobby CBT/GET type thing. It is mainly a relaxed form of Pacing. They do quite a lot of relaxation stuff. The ethos is to try to remove things that may prevent the body healing itself (there's a great Florence Nightingale quote that says that is the point of medicine).
Money is a factor. Costs quickly add up. This is partly what prompted me to start my blog because I wanted to share things that are cheap or free and people find beneficial.
Some of OHC I did find too wacky as well, although I generally like their open-minded approach and that they're not tied to a ® process. Eg I didn't get on with EFT at all. In some ways I think they're unwise in their branding, given the wider context of ME in the UK.
However, I think they are people who really had ME who really are experiencing functional recovery. I find it a little distasteful when recovery stories are dismissed in this way. I've got to 95% before and meet the various ME definitions (admittedly I obviously wasn't properly cured!). I've known several people return to normal life who did convincingly have full-on ME. People do get better, although at the moment this is a bit mysterious and random. We obviously need systematic biomedical treatment that can predictably get everyone well.
To sum up I had a qualified positive experience with OHC. Money I think is the main issue.
They may well be doing things that make a lot of sense for ME, properly diagnosed as well as not. Their treatment overview includes some things we know can be helpful. Here's their own overview:
Confirmation of diagnosis
Organisation of additional relevant tests to confirm diagnosis and identify any contributing factors
GP / Specialist liaison
Help with sleep problems
Management of allergy and intolerance eg food and chemical sensitivity problems
Endocrine support – identification and management of sub-clinical hypothyroidism; adrenal support and bio-identical hormone replacement therapy where appropriate
Identification and treatment of gut dysbiosis
Nutritional support eg high dose B12 injections and Myers nutritional infusions (intramuscular and intravenous injection); vitamin C infusions
Help with depression and anxiety. Basic prescribing and referral for further support where appropriate.
There are things in there that NHS clinics won't offer, thanks to PACE, and which patients here have used with success. This kind of approach, well-tailored to an individual, may be helpful for someone with properly diagnosed ME, but it's hard to know. And their proposed trial won't answer that question. They're talking about GP referrals in the UK, so we know the Oxford criteria will be in play.
My biggest problem is with the OHC's structure, which I regard as very disingenuous. It converted to a charity a couple of years ago, and proudly announces on the front of its website that "all profits go into ME/CFS research". But that's the OHC Foundation they're talking about, which has a declared revenue of less than £100K.
Through the site portal shared between the charity and the practitioners, payment is made for blocks of treatment to small limited companies in the names of various practitioners and companies like Alex Howard & Associates, Conscious Psychology Ltd.
They're using a charitable foundation as a marketing tool for private practice, and more worryingly they're using that charity to get a foot in the door with the NHS.
From that annual report:
To achieve our mission of enabling more ME/CFS patients to receive the OHC methods of treatment, it is necessary to create an evidence base that the NHS will accept.
There's no way of knowing how much the private operators within the charitable umbrella make because they're all non-public companies. And they're now trying to use the charitable umbrella to "create an evidence base", but we can guarantee that their trial will use impossibly vague diagnostic criteria and produce the same sort of 'evidence' we got from PACE.
I'm glad the OHC helped you. But everything about OHC pushes my skeptic buttons.
As I say, some of what they do looks like it could be helpful, even very helpful. But there's something about the way they do business which makes it impossible for me to trust them. If others feel differently, as long as they go into it with their eyes open, no problem.
p.s. I'm quite willing to accept that they may do good work. But if so I'd like to see them publish some real work, like comprehensive patient histories with details of treatment regimens, instead of those patient testimonials which are usually found on hard sell 'miracle cure' websites.
When I was paying it was a straightforward private practice. I paid my nutritionist and I had the impression that she paid a percentage to OHC (but this may not be quite right). Most of my money went on supplements not bought through OHC mind you, and the tests were from separate labs. I don't think the actual OHC organisation made much money from me but getting treatment was expensive overall.
I still spend money on supplements now but not the same ones.
They seem to use CDC not Oxford criteria but my eyes are hurting too much to check.
I understand your scepticism and if I'd been well enough to read at the time I probably would have picked up on scepticism and not tried (I won't do the ⚡ Process for example). It does make me wonder a bit if the ⚡ Process isn't as bad as I think it is, but it's hard to get sense out of anyone who is positive about that. If someone could review that like I've commented on OHC it would be useful.